PROMs Repository

The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes questionnaires of relevance for rare diseases and constitutes a milestone in the Europe-wide standardization of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. It has been made possible through the joint collaboration between Orphanet, Mapi Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs. The methodology for the constitution and future evolution of the repository can be found in deliverable 3.1 (, 849 KB) and deliverable 3.2 (, 661 KB).

The central repository is a dynamic and evolutive service and should be regarded as a centralized and standardized access gate to more in depth information contained in PROQOLID™.

NEWs! (May 2023): Content of the repository has been enriched with Observer-Reported Outcome Measures (ObsROMs), with PROMs & ObsROMs measuring quality of life as well as PROMs & ObsROMs recently developed for rare diseases.

Your contribution is crucial to identify new measures and keep alive and up-to date the repository – If you know about PROMs, ObsROMs or other Patient Centered-Clinical Outcomes Assessment (PC-COA) measures (Clinician-Reported Outcome Measure (ClinROM) and Performance Outcome (PerfO)) developed or validated for any rare diseases not included yet in the repository.

Please Contribute

 

PCOM/PROM Name	Type	PROQOLID™	Age	Domains	Disease (OrphaName)	OrphaCode	Group of Diseases	ERNs	PROQOLID™ Link
Adult Sickle Cell Quality of Life Measurement Information System® (ASCQ-Me®)	PRO	Full	Adult	Emotional impact (20 items) Social functioning (17 items) Pain (13 items) Stiffness (15 items) Sleep functioning (12 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
EORTC QLQ - Chronic Myeloid Leukaemia (EORTC QLQ-CML24)	PRO	Full	Adult	Symptom Burden Impact on Daily Life Impact on Worry/Mood Body Image Problems Satisfaction with Care and Satisfaction with Social Life	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
EORTC QLQ - Non Hodgkin Lymphoma Low Grade Module (EORTC- QLQ-NHL-LG20)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (4 items) Physical condition/Fatigue (4 items) Emotional impacts (4 items) Worries/Fears health and functioning (8 items)	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Haemophilia Quality of Life Questionnaire for Children (Haemo-QOL)	PRO or ObsRO	Full	Pediatric Adolescent	Physical health Feeling Attitude (view) Family Friends Other people Sport and school/kindergarten Coping/dealing Treatment Perceived support Future Relationship	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro)	PRO or ObsRO	Full	Pediatric Adolescent	Adherence to treatment -Timing (4 items) Adherence to treatment -Dosing (4 items) Adherence to treatment -Planning (4 items) Adherence to treatment -Remembering (4 items) Adherence to treatment -Skipping (4 items) Adherence to treatment -Communicating (4 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Assessment of caregiver experience with neuromuscular disease (ACEND)	PRO	Full	Caregiver	Domain 1: Physical impact-feeding/grooming/dressing (6 items) Domain 1: Physical impact-Sitting/play (5 items) Domain 1: Physical impact-Transfers (5 items) Domain 1: Physical impact-Mobility (7 items) Domain 2: General caregiver impact-Time (4 items) Domain 2: General caregiver impact-Emotion (9 items) Domain 2: General caregiver impact-Finance (5 items)	Neuromuscular disease	68381	Rare neuromuscular disease	ERN EURO-NMD	Link
Achondroplasia Personal Life Experience Scale - Child version (APLES - Child version)	PRO	Full	Pediatric Adolescent	Self-perception (6 items) Family (4 items) Friends (7 items) Recreation (Sport, clothes, shoping: 5 items) Kindergarten/School (3 items) Strangers (4 items) Physical (6 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Achondroplasia Personal Life Experience Scale - Parent Version (APLES - Parent Version)	ObSRO	Full	Pediatric Adolescent	Self-perception (6 items) Family (4 items) Friends (7 items) Recreation (Sport, clothes, shoping: 5 items) Kindergarten/School (3 items) Strangers (4 items) Physical (6 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Acromegaly Quality of Life questionnaire (AcroQoL)	PRO	Full	Adult	Physical (8 items) Psychological (14 items)	Acromegaly	963	Rare endocrine disease	Endo-ERN	Link
Activities of Daily Vision & Daily Task Performance Questionnaire (ADVS)	PRO	Full	Aged	Distance vision Near vision Glare disability Night driving Daytime driving	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Activities Scale for Kids©-Performance (ASK©-Performance)	PRO or ObsRO	Full	Pediatric Adolescent	Physical functioning: walk without any support get around INSIDE walk (or wheel) in crowded areas walk up and down a flight of stairs stand still for 10 minutes carry things in 2 hands stretch to reach carry a drink or food get in and out of a chair sit on the floor get in and out of my bed get down onto the floor from standing get through heavy doors got around outside play some sports walk (or wheel) on rough or slippery surfaces walk (or wheel) up a gentle hill keep up running get in and out of an automobile Activities of Daily Living: brush my teeth getting on and off the toilet wash my whole body put my shirt on put my pants on fasten my clothes put my shoes on and do them up script writing take care of my medical needs made a snack do my usual job or chores	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER ERN TRANSPLANT-CHILD	Link
Activities-Specific Balance Confidence Scale (ABC scale)	PRO	Full	Adult Aged	Balance confidence	Not applicable	Not applicable	Not applicable	Not applicable	Link
Activity Limitations Questionnaire (ACTIVLIM)	PRO or ObsRO	Full	Pediatric Adolescent Adult Aged	Putting on a T-shirt Washing one's upper body Dressing one's lower body Taking a shower Sitting on the toilet Taking a bath Walking dowstairs Stepping out of a bath tub Opening a door Walking outdoors on level ground Washing one's face Hanging up a jacket on a hatstand Wiping one's upper body Walking upstairs Carrying a heavy load Getting into a car Standing for a long time (± 10 min) Walking more than 1 kilometre Closing a door Hopping on one foot Putting on a backpack Running	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Activity Limitations Questionnaire (ACTIVLIM)	PRO or ObsRO	Full	Pediatric Adolescent Adult Aged	Putting on a T-shirt Washing one's upper body Dressing one's lower body Taking a shower Sitting on the toilet Taking a bath Walking dowstairs Stepping out of a bath tub Opening a door Walking outdoors on level ground Washing one's face Hanging up a jacket on a hatstand Wiping one's upper body Walking upstairs Carrying a heavy load Getting into a car Standing for a long time (± 10 min) Walking more than 1 kilometre Closing a door Hopping on one foot Putting on a backpack Running	Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy	166	Rare peripheral neuropathy	ERN EURO-NMD	Link
Activity Limitations Questionnaire (ACTIVLIM)	PRO or ObsRO	Full	Pediatric Adolescent Adult Aged	Putting on a T-shirt Washing one's upper body Dressing one's lower body Taking a shower Sitting on the toilet Taking a bath Walking dowstairs Stepping out of a bath tub Opening a door Walking outdoors on level ground Washing one's face Hanging up a jacket on a hatstand Wiping one's upper body Walking upstairs Carrying a heavy load Getting into a car Standing for a long time (± 10 min) Walking more than 1 kilometre Closing a door Hopping on one foot Putting on a backpack Running	Myotonic dystrophy	206647	Rare neuromuscular disease	ERN EURO-NMD	Link
Activity Limitations Questionnaire (ACTIVLIM)	PRO or ObsRO	Full	Pediatric Adolescent Adult Aged	Putting on a T-shirt Washing one's upper body Dressing one's lower body Taking a shower Sitting on the toilet Taking a bath Walking dowstairs Stepping out of a bath tub Opening a door Walking outdoors on level ground Washing one's face Hanging up a jacket on a hatstand Wiping one's upper body Walking upstairs Carrying a heavy load Getting into a car Standing for a long time (± 10 min) Walking more than 1 kilometre Closing a door Hopping on one foot Putting on a backpack Running	Neuromuscular disease	68381	Rare neuromuscular disease	ERN EURO-NMD	Link
Addison's Disease specific Quality of Life Questionnaire - 30 (AddiQOL-30)	PRO	Full	Adult	Fatigue Symptom Emotion	Addison disease	85138	Rare endocrine disease	Endo-ERN	Link
Addison's Disease specific Quality of Life Questionnaire - 8 (AddiQOL-8)	PRO	Full	Adult	Fatigue Symptom Emotion	Addison disease	85138	Rare endocrine disease	Endo-ERN	Link
Adult Self Report (ASR)	PRO	Basic	Adult	anxious/depressed withdrawn somatic complaints thought problems attention problems aggressive behavior rule-breaking behavior intrusive behavior	Not applicable	Not applicable	Not applicable	Not applicable	Link
Amyotrophic Lateral Sclerosis Survey (ALS Survey)	PRO	Full	Adult	Speech Salivatin Swallowing Handwritting Cutting food and handling utensils Cutting food and/or handling feeding tube closures, cans or utensils Dressing and hygiene Turning in bed and adjusting sheets walking Climbingstairs Shortness of breath (Dyspnea) Trouble breathing while lying down (Orthopnea) Breathing Assistance/Respiratory Insufficiency Pain Crying or laughing uncontrollably religious or spiritual beliefs Treatment best use	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Amyotrophic Lateral Sclerosis Survey (ALS Survey)	PRO	Full	Adult	Speech Salivatin Swallowing Handwritting Cutting food and handling utensils Cutting food and/or handling feeding tube closures, cans or utensils Dressing and hygiene Turning in bed and adjusting sheets walking Climbingstairs Shortness of breath (Dyspnea) Trouble breathing while lying down (Orthopnea) Breathing Assistance/Respiratory Insufficiency Pain Crying or laughing uncontrollably religious or spiritual beliefs Treatment best use	Spinal Muscular Atrophy	70	Rare neuromuscular disease	ERN EURO-NMD	Link
Amyotrophic Lateral Sclerosis Survey (ALS Survey)	PRO	Full	Adult	Speech Salivatin Swallowing Handwritting Cutting food and handling utensils Cutting food and/or handling feeding tube closures, cans or utensils Dressing and hygiene Turning in bed and adjusting sheets walking Climbingstairs Shortness of breath (Dyspnea) Trouble breathing while lying down (Orthopnea) Breathing Assistance/Respiratory Insufficiency Pain Crying or laughing uncontrollably religious or spiritual beliefs Treatment best use	Motor neuron disease	98503	Rare neuromuscular disease	ERN EURO-NMD	Link
Arthritis Educational Needs Assessment Tool (ENAT)	PRO	Full	Adult	Managing pain (6 items) Movement (5 items) Feelings (4 items) Arthritis (7 items) Treatment from health professionals (7 items) Self-help measures (6 items) Support from others (4 items)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Autoimmune Bullous Disease Quality of Life Questionnaire (ABQOL)	PRO	Full	Adult Aged	Psychosocial (9 items) Mucosal (3 items) Symptoms (5 items)	Autoimmune bullous skin disease	79669	Rare skin disease	ERN Skin	Link
Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)	PRO	Full	Adult	Fatigue (1 item) Spinal pain (1 item) Joint pain/swelling (1 item) Areas of localized tenderness (1 item) Morning stiffness (2 items)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Bath Ankylosing Spondylitis Functional Index (BASFI)	PRO	Full	Adult	Dressing (1 item) Bending (1 item) Reaching (1 item) Standing from seated position (1 item) Standing from lying position (1 item) Standing unsupported (1 item) Climbing steps (1 item) Turning body (1 item) Physical activities (1 item) Everyday activities (1 item)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Behavior Rating Inventory of Executive Function® (BRIEF®)	PRO or ObsRO	Full	Pediatric Adolescent	Inhibit Shift Emotional Control Initiate Working Memory Plan/Organize Organization of Materials Monitor	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behçet's disease Quality of Life (BD-QoL)	PRO	Full	Pediatric Adolescent Adult Aged	Quality of life	Behçet disease	117	Rare systemic or rheumatologic disease	ERN RITA	Link
Beliefs about Medicines Questionnaire (BMQ)	PRO	Full	Adult	BMQ-Specific - Specific-Necessity (5 items): beliefs about the necessity of prescribed medication BMQ-Specific - Specific-Concerns (5 items): concerns about prescribed medication based on beliefs about the danger of dependence and long-term toxicity and the disruptive effects of medication BMQ-General - General-Harm (4 items): beliefs that medicines are harmful, addictive, poisons which should not be taken continuously BMQ-General - General-Overuse (4 items): beliefs that medicines are overused by doctors	Not applicable	Not applicable	Not applicable	Not applicable	Link
Bladder Exstrophy Epispadias Complex Quality of Life Questionnaire (BEEC-QOL)	PRO	No	Adult	No information	Exstrophy-epispadias complex	322	Rare urogenital disease	ERN eUROGEN	Link
Borg Dyspnea Scale (Borg CR10 Scale®)	PRO	Full	Adult	Dyspnea (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
BREAST Q	PRO	Full	Adult	Augmentation Scales-Satisfaction with Breasts Breast Cancer Core Scales Mastectomy Scales Breast Conserving Therapy Scales Reconstruction Scales Reconstruction Scale Reconstruction Expectations Scales Reduction/Mastopexy Scales Utility Scales	Not applicable	Not applicable	Not applicable	Not applicable	Link
Brief Illness Perception Questionnaire (Brief IPQ)	PRO	Full	Pediatric Adolescent Adult	Consequences Timeline Personal control Treatment control Identity Concern Understanding Emotional responses Causal representation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Canadian Hemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT)	PRO or ObsRO	Full	Caregiver Pediatric	Somatic symptoms physical functioning sleep disturbance stigma social functioning fear/resentment mood/behaviour restrictions treatment upset haemophilia concern energy level	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Charcot-Marie-Tooth Health Index (CMTHI)	PRO	Full	Adult	Mobility and ambulation Foot and ankle strength Balance Ability to due activities Hand and finger function Numbness Pain Fatigue Daytime sleepiness Emotional state Performance in social situations Cognitive function Heartburn Lower gastrointestinal function Hearing Breathing Ability to swallow Shoulder and arm function	Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy	166	Rare peripheral neuropathy	ERN EURO-NMD	Link
Child Health Questionnaire (CHQ)	PRO or ObsRO	Full	Pediatric	Child/adolescents concepts-General health Child/adolescents concepts-change in health Child/adolescents concepts-physical functioning Child/adolescents concepts-bodily pain/discomfort Child/adolescents concepts-limitations in school, work, and activities with friends due to physical problems Child/adolescents concepts-limitations in school, work, and activities with friends due to emotional difficulties Child/adolescents concepts-limitations in school, work, and activities with friends due to behavioral difficulties Child/adolescents concepts-behavior Child/adolescents concepts-self esteem Child/adolescents concepts Parent/family concepts-emotional and time impact on the parent Parent/family concepts-limitations in family activities Parent/family concepts-family cohesion	Not applicable	Not applicable	Not applicable	Not applicable	Link
Childhood Health Assessment Questionnaire (CHAQ)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Dressing and Grooming Arising Eating Walking Hygiene Reach Grip Activities Discomfort	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link Link
Children's Dermatology Life Quality Index (CDLQI)	PRO	Full	Pediatric Adolescent	Symptoms and feelings (2 items) Leisure (3 items) School and holidays (1 item) Personnal relationships (2 items) Sleep (1 item) Treatment (1 item)	Not applicable	Not applicable	Rare skin disease Rare systemic or rheumatologic disease	ERN Skin ERN ReCONNET	Link
CLEFT-Questionnaire (CLEFT-Q)	PRO	Full	Pediatric Adolescent Adult	Appearance (7 themes: face, nose, nostrils, teeth, lips, jaws and cleft lip scar) Health-related quality of life (4 themes: psychological, social, school, speech distress) Facial function (2 themes: eating/drinking, speech)	Cleft lip/palate	199306	Rare systemic or rheumatologic disease	ERN CRANIO ITHACA	Link
Cochin 17-item Scleroderma Functional Scale (CSF-17)	PRO	Full	Adult Aged	Mobility (10 items) General tasks (7 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Cushing's disease quality of life instrument (CushingQoL)	PRO	Full	Adult Aged	Daily life emotional physical aspect	Cushing Syndrome	553	Rare endocrine disease	Endo-ERN	Link
Cystic Fibrosis Quality of Life (CFQoL)	PRO	Full	Adolescent Adult	Physical functioning (10 items) Social functioning (4 items) Treatment issues (3 items) Chest symptoms (4 items) Emotional responses (8 items) Concerns for the future (6 items) Interpersonal relationships (10 items) Body image (3 items) Career concerns (4 items)	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Cystic Fibrosis Questionnaire (CFQ)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Physical functioning (CFQ 14+ / CFQ Child P) Role (CFQ 14+) Energy/Well-Being (CFQ 14+ / CFQ Child P) Emotions (CFQ 14+ / CFQ Child P) Performance at school (CFQ Child P) Social limitations (CFQ 14+) Body image (CFQ 14+ / CFQ Child P) Embarrassment (CFQ 14+) Eating disturbances (CFQ 14+ / CFQ Child P) Treatment burden (CFQ 14+ / CFQ Child P) Weight Respiratory symptoms Digestive symptoms Health perception	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER ERN TRANSPLANT-CHILD	Link
Cystic Fibrosis Questionnaire-Revised (CFQ-R)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Physical functioning (CFQ 14+ / CFQ Child P) Role (CFQ 14+) Energy/Well-Being (CFQ 14+ / CFQ Child P) Emotions (CFQ 14+ / CFQ Child P) Performance at school (CFQ Child P) Social limitations (CFQ 14+) Body image (CFQ 14+ / CFQ Child P) Embarrassment (CFQ 14+) Eating disturbances (CFQ 14+ / CFQ Child P) Treatment burden (CFQ 14+ / CFQ Child P) Weight Respiratory symptoms Digestive symptoms Health perception	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER ERN TRANSPLANT-CHILD	Link
Der Familien-Belastungs-Fragebogen (FABEL) - Impact on family scale	PRO	No	Pediatric	Financial Burden (4 items) refers to the economic consequences for the family Familial/Social Impact (9 items) concerns the disruption of social interaction Personal Strain (6 items) assesses the psychological burden experienced by the primary caretaker Mastery (5 items) refers to the coping strategies employed by the family	Not applicable	Not applicable	Not applicable	Not applicable
Dermatology Life Quality Index (DLQI)	PRO	Full	Adolescent Adult	Symptoms and feelings (2 items) Daily activities (2 items) Leisure (2 items) Work and school (1 item) Personal relationships (2 items) Treatment (1 item)	Not applicable	Not applicable	Rare skin disease Rare systemic or rheumatologic disease	ERN Skin ERN ReCONNET	Link
Disability of the Arm Shoulder and Hand (DASH)	PRO	Full	Adult	Dash (30 items) Additional (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Disease Specific Module for Epilepsy (EM) - Proxy version (DISABKIDS EM)	PRO or ObsRO	Full	Pediatric Adolescent	Impact (5 items) Social (5 items) + 3 items on symptoms	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link Link
Duchenne Muscular Dystrophy Upper Limb Patient-Reported Outcome Measure (DMD Upper Limb PROM)	PRO or ObsRO	Full	Pediatric Adolescent	Food Self-care Household and environment Leisure and communication	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
DUX25	PRO	No	No information	No nformation	No nformation	No nformation	Not applicable	Not applicable
EORTC QLQ - Breast Cancer Module (EORTC QLQ-BR23)	PRO	Full	Adult	Body image (4 items) Sexual functioning (2 items) Sexual enjoyment (1 item) Future perspective (1 item) Arm symptoms (3 items) Breast symptoms (4 items) Systemic therapy side effects (7 items) Upset by hair loss (1 item)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
EORTC QLQ - Core Questionnaire (EORTC QLQ-C30)	PRO	Full	Adult	Global health status/quality of life (2 items) Physical functioning (5 items) Role functioning (2 items) Emotional functioning (4 items) Cognitive functioning (2 items) Social functioning (2 items) Fatigue (3 items) Nausea and vomiting (2 items) Pain (2 items) Dyspnea (1 item) Insomnia (1 item) Appetite loss (1 item) Constipation (1 item) Diarrhea (1 item) Financial impact (1 item)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
EORTC QLQ - Hodgkin Lymphoma Module (EORTC QLQ-HL27)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (6 items) Physical condition/fatigue (4 items) Emotional impacts (6 items) Worrie/fears health and functioning (11 items)	Hodgkin lymphoma	98293	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
EORTC QLQ - Multiple Myeloma Module (EORTC QLQ-MY20)	PRO	Full	Adult	Disease symptoms (6 items) Side-effects of treatment (10 items) Future perspective (3 items) Body image (1 item)	Multiple Myeloma	29073	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
Epilepsy and Learning Disabilities Quality of Life (ELDQOL)	PRO	Full	Pediatric Adolescent	Seizure severity Seizure-related injuries Antiepileptic drug side effects Behavior Mood Physical Cognitive Social functioning Parental concern Communication Overall quality of life Overall health	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Epworth Sleepiness Scale (ESS)	PRO	Full	Adult	Sleep	Not applicable	Not applicable	Not applicable	Not applicable	Link
EQ-5D 3L, 5L, Youth	PRO	Full	Pediatric Adolescent Adult	Mobility (1 item) Looking after myself (1 item) Doing usual activities (1 item) Having pain or discomfort (1 item) Feeling worried, sad or unhappy (1 item) + 1 additional VAS scale	Not applicable	Not applicable	Not applicable	Not applicable	Link Link Link
Esophageal-Atresia-Quality-of-life Questionnaire (EA-QOL)	PRO	Full	Pediatric Adolescent	Children 2-7 years old (parent report)-Physical health & treatment Children 2-7 years old (parent report)-Eating Children 2-7 years old (parent report)-Social isolation & stress Children 8-17 years old (child report)-Eating Social relationships Children 8-17 years old (child report)-Body perception Children 8-17 years old (child report)-Health & wellbeing	Esophageal atresia	1199	Rare gastroenterologic disease	ERNICA	Link
European League Against Rheumatism (EULAR) Sjögren syndrome Patient-Reported Index (ESSPRI)	PRO	Full	Adult	Dryness (1 item) Pain (1 item) Fatigue (1 item)	Primary Sjögren syndrome	289390	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Everyday Task Questionnaire	PRO	No	No information	No nformation	Not applicable	Not applicable	Not applicable	Not applicable
FACE-Q	PRO	Full	Adult	Facial Appearance Health-Related Quality of Life Adverse Effects Process of Care	Not applicable	Not applicable	Rare maxillo-facial surgical disease	Not applicable	Link
FACE-Q Craniofacial Module	PRO	Full	Adult	Appearance (Eyes, Face, Forehead, Lips, Smile) Function (Breathing, Eating, Eyes, Facial, Speech) Adverse effects (Eyes, Face) HRQuality of life (Appearance Distress, Psychological, Social, School, Speech Distress)	Not applicable	Not applicable	Rare maxillo-facial surgical disease	Not applicable	Link
FACIT-F	PRO	Full	Adult	Physical Well-being (7 items) Social / Family Well-being (7 items) Emotional Well-being (6 items) Functional Well-being (7 items) Fatigue subscale (13 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
FACIT-Fatigue	PRO	Full	Adult	Fatigue (13 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
FACT - Bone Marrow Transplantation (FACT-BMT)	PRO	Full	Adult	Physical Well-being (PWB) (7 items) Social / Family Well-being (SWB) (7 items) Emotional Well-being (EWB) (6 items) Functional Well-being (FWB) (7 items) Additional concern items (Bone Marrow Transplantation subscale, BMTS) (23 items)	Not applicable	Not applicable	Rare disorder potentially indicated for transplant or complication after transplantation	Not applicable	Link
Family Dermatology Life Quality Index (FDLQI)	PRO	Full	Caregiver Adult	Health-related Quality of Life (10 items)	Not applicable	Not applicable	Rare skin disease Rare systemic or rheumatologic disease	ERN Skin ERN ReCONNET	Link
Fatigue Severity Scale (FSS)	PRO	Full	Adolescent Adult	Fatigue (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Fecal Incontinence Quality of Life scale (FIQL)	PRO	Full	Adult	Lifestyle (10 items) Coping/behavior (9 items) Depression/self-perception (7 items) Embarrassment (3 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Female Sexual Function Index (FSFI)	PRO	Full	Adult	Desire (2 items) Arousal (4 items) Lubrication (4 items) Orgasm (3 items) Global satisfaction (3 items) Pain (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Fertigkeitenskala Münster Heidelberg (FMH) - Munster Heidelberg Abilities Scale	PRO	No	No information	No nformation	Not applicable	Not applicable	Not applicable	Not applicable
Fragebogen zum Körperbild/Body Image Questionnaire (FKB-20 / BIQ-20)	PRO	Full	Adult	Negative Evaluation of the Body (10 items):This scale focuses on satisfaction and dissatisfaction with physical appearance and on feelings of coherence and well-being with one’s own body Perception of Body Dynamics (10 items):This scale addresses the energetic aspects of the body image and comprises self-experienced strength, fitness, and health. Body image related aspects of sexuality are also included in this scale	Not applicable	Not applicable	Not applicable	Not applicable	Link
Functional Disability Inventory - Child Form (FDI-Child Form)	PRO	Full	Pediatric Adolescent	Sleep and rest (2 items) Eating (1 item) Home management (1 item) School (2 items) Ambulation (4 items) Mobility (1 item) Social interaction/Recreation (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link Link
Functional Vision Questionnaire for Children and Young People (FVQ-CYP)	PRO	Basic	Adolescent	Activity of daily living	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Functional Vision Questionnaire for Children (FVQ-C)	PRO	Full	Pediatric Adolescent	Watching TV Playing video and computer games Playing other indoor games, such as board games or card games Playing outdoor games, such as tag or hide and seek Using the computer at home to do my school work Doing household jobs, for example, tidying up my toys Using the computer in school lessons Reading small print worksheets and textbooks like dictionaries Reading enlarged worksheets and textbooks like dictionaries Drawing or painting Reading other people’s handwriting Seeing the board in the classroom Recognising people, for example in school corridors Recognising other people’s facial expressions Finding friends in the playground Doing maths in lessons Doing literacy in lessons Doing PE Keeping up with the teacher in lessons Keeping up with other children in lessons Getting around school without someone helping me Playing team sports without special balls Seeing small balls when playing games like tennis or cricket Seeing big moving objects, such as bicycles passing by Getting around outdoors in daytime Reading signs and posters at stations or shops Watching films in the cinema Watching shows at the theatre	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Functional Vision Questionnaire for Young People (FVQ-YP)	PRO	Full	Adolescent	Watching TV Playing video and computer games Playing other indoor games, such as board games or card games Using the computer at home to do my school work Reading food packets, tickets, labels or recipes Doing household chores, for example, washing up or tidying my bedroom Looking after my appearance, for example, doing my hair, shaving, or putting on make-up Making myself a snack at home Making myself a meal Finding objects I have dropped such as coins or glasses on a low contrast surface Using the computer at school or college to do schoolwork/coursework Reading small print textbooks, worksheets and exam papers Reading other people’s handwriting Seeing the board in the classroom when sitting at the front Recognising people, for example, in corridors at school/college or shops Recognising other people’s facial expressions when they are close to me/at arm’s length Finding friends in crowded areas Doing maths Doing science Doing sports at school/college Keeping up with the teacher or tutor in lessons Keeping up with other students in lessons Getting around school/college by myself Playing team sports, such as football, without adaptations such as special balls Seeing small balls when playing games, such as tennis or cricket Seeing big moving objects, such as bikes passing, in daylight Getting around outdoors e.g. shops or the park, by myself when it’s daylight Getting around outdoors e.g. shops or the park, by myself when it’s dark Getting around in crowds by myself Reading signs and posters at stations or shops Finding correct money to pay when shopping Watching films in the cinema Watching shows at the theatre Crossing the road by myself Using public transport, such as trains, buses or the tube by myself Using a mobile phone to text people Using a mobile phone or tablet for social networking, for example, Facebook, Twitter or MySpace.	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Functional Vision Questionnaire Observer-Reported Outcomes (FVQ ObsRO)	obsRO	Basic	Pediatric Adolescent	Night blindness Light/dark adaptation Vision in bright light contrast sensitivity difficulty seeing color loss of peripheral vision distance vision depth perception reading finding things in familiar environment driving finding things in unfamilair environement viewing digital screens household chores self-care eating mobility in unfamiliar environment mobility in dark or dim light going up bumping into object falling leisure activities social functioning recognizing facial expression and faces goigin to social events interpersonal/family relationship independence emotional well-being work and school	Retinitis Pigmentosa	791	Rare ophthalmic disorder	VASCERN	Link
Functional Vision Questionnaire Patient-Reported Outcomes (FVQ PRO)	PRO	Basic	Pediatric Adolescent	Night blindness Light/dark adaptation Vision in bright light contrast sensitivity difficulty seeing color loss of peripheral vision distance vision depth perception reading finding things in familiar environment driving finding things in unfamilair environement viewing digital screens household chores self-care eating mobility in unfamiliar environment mobility in dark or dim light going up bumping into object falling leisure activities social functioning recognizing facial expression and faces goigin to social events interpersonal/family relationship independence emotional well-being work and school	Retinitis Pigmentosa	791	Rare ophthalmic disorder	VASCERN	Link
General Self-Efficacy Scale (GSE)	PRO	Basic	Adult	Self-efficacy (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Generalized Anxiety Disorder - 7 (GAD-7)	PRO	Full	Adult	Anxiety (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Genetic Counseling Outcome Scale (GCOS-24)	PRO	Full	Adult	Genetic Counseling	Not applicable	Not applicable	Rare genetic disease	Not applicable	Link
Genetic Syndromes Stressors Scale (GSSS)	PRO or ObsRO	No	Pediatric Adolescent	Parental stressors in relation to unusual genetic illnesses (14 items)	Rare genetic developmental defect during embryogenesis	183530	Rare genetic developmental defect during embryogenesis	ERN ITHACA
GNE myopathy- Functional activity scale (GNEM-FAS)	PRO	Full	Adult	Mobility Upper extremity use Self-care	GNE myopathy	602	Rare neuromuscular disease	ERN EURO-NMD	Link
Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)	PRO	Full	Adult	Physical health (5 items) Feeling (4 items) View of yourself (5 items) Sports and leisure (5 items) Work and school (4 items) Dealing with haemophilia (3 items) Treatment (8 items) Future (5 items) Family planning (4 items) Partnership and sexuality (3 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Hand scleroDerma lived Experience (HAnDE) scale	PRO	Full	Adult Aged	No information	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Health Assessment Questionnaire (HAQ)	PRO	Full	Adult	Disability-Dressing and grooming (2 items) Disability-Arising (2 items) Disability-Eating (3 items) Disability-Walking (2 items) Disability-Hygiene (3 items) Disability-Reach (2 items) Disability-Grip (3 items) Disability-Common daily activities (3 items) Discomfort and pain (1 item) Global Health Assessment (1 item)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Health Assessment Questionnaire Disability Index (HAQ-DI)	PRO	Full	Adult	Disability-Dressing and grooming (2 items) Disability-Arising (2 items) Disability-Eating (3 items) Disability-Walking (2 items) Disability-Hygiene (3 items) Disability-Reach (2 items) Disability-Grip (3 items) Disability-Common daily activities (3 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Hidradenitis suppurativa Physical global assesment (HS-PGA)	PRO	No	Adult	Global assessment (1 item)	Not applicable	Not applicable	Rare skin disease	ERN Skin
Hospital Anxiety and depression scale (HADS)	PRO	Full	Adult	Anxiety (7 items) Depression (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Hypospadias-Specific Health-Related Quality of Life (HRQoL)	PRO	Full	Pediatric Adolescent Adult	Penile appearance Voiding Social interaction Sexual health Psychological or behavioral function	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Impact of Vision Impairment–Very Low Vision Questionnaire (IVI-VLV)	PRO	Full	Adult	Emotional Well-Being (12 items) Activities of Daily Living, Mobility, and Safety (16 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Impact on participation and autonomy questionnaire (IPA)	PRO	Basic	Adult	Autonomy indoors (7 items) Family role (7 items) Autonomy outdoors (5 items) Social life and relationships (7 items) Work and education (6 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Impact of NF1 on Quality Of Life questionnaire (INF1-QOL)	PRO	Full	Adult	Vision Cosmetic appearance Pain (quality and intensity) Learning Problems Behaviour and Personality Mobility and Walking Hand Function Speech Bone Health Breathing Sleeping Role and Outlook on Life Depression and Anxiety	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Independent Mobility Questionnaire (IMQ)	PRO	Full	Adult Aged	Ability for independent mobility mobility-related behavior	Retinitis Pigmentosa	791	Rare ophthalmic disorder	ERN EYE	Link
Individualized Neuromuscular Quality of Life Questionnaire (INQoL)	PRO	Full	Adult	Weakness (3 items) Locking (3 items) Pain (3 items) Fatique (3 items) Activities (5 items) Independanence (3 items) Social relationships (10 items) Emotions (6 items) Body image (3 items) Perceived treatment effects (3 items) Expected treatment effects (3 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Inflammatory Rasch-built Overall Disability Scale (I-RODS)	PRO	Full	Adult	No information	Chronic inflammatory demyelinating polyneuropathy	2932	Rare systemic or rheumatologic disease Rare peripheral neuropathy	ERN RITA ERN EURO-NMD	Link
Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB)	ClinRO	Full	Pediatric Adolescent	Disease severity	Epidermolysis bullosa simplex	304	Rare skin disease	ERN Skin	Link
International Consultation on Incontinence Questionnaire - Urinary Incontinence Short Form (ICIQ-UI Short Form)	PRO	Full	Adult	Symptoms of urinary incontinence (2 items) Impact of urinary incontinence on everyday life (1 item) Perceived causes of urinary incontinence (1 item) (not scored)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
International Prostate Symptom Score (I-PSS)	PRO	Full	Adult	Symptoms (7 items) Impact of urinary symptoms on Quality of life (1 item)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (ISTH BAT)	PRO	Full	Pediatric Adolescent Adult	Epistaxis Cutaneous bleeding Minor cutaneous wound Oral cavity bleeding Hematemesis, melena, and hematochezia Hematuria Tooth extraction Surgical bleeding Menorrhagia Post-partum bleeding Muscle hematomas or hemarthrosis CNS bleeding Other bleeding symptoms	Not applicable	Not applicable	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Interstitial Cystitis Symptom Index and Problem Index (ICSI-ICPI)	PRO	Full	Adult	(ICSI): Symptom Index (4 items) (ICPI): Problem Index (4 items)	Interstitial cystitis	37202	Rare urogenital disease	ERN eUROGEN	Link
Juvenile Arthritis Multidimensional Assessment Report-Parent Proxy Report (JAMAR-Parent Proxy Report)	ObsRO	Full	Pediatric Adolescent	Functional ability (15 items) Pain intensity: (1 item) quality of life (10 items) Overall well-being (1 item) Presence of pain or swelling (1 item) Morning stiffness (1 item) Level of disease activity (1 item) Disease status (1 item) Disease course from previous visit (1 item) Satisfaction with the outcome of the illness (1 item)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
KIDSCREEN	PRO or ObsRO	Full	Pediatric Adolescent	KIDSCREEN-52-Physical Well-Being KIDSCREEN-52-Psychological Well-Being KIDSCREEN-52-Moods & Emotions KIDSCREEN-52-Self-Perception KIDSCREEN-52-Autonomy KIDSCREEN-52-Parent Relation & Home Life KIDSCREEN-52-Social Support & Peers KIDSCREEN-52-School Environment KIDSCREEN-52-Social Acceptance (Bullying) KIDSCREEN-52-Financial Resources KIDSCREEN-27-Physical Well-Being KIDSCREEN-27-Psychological Well-Being KIDSCREEN-27-Parents & Autonomy KIDSCREEN-27-Social Support & Peers KIDSCREEN-27-School Environment KIDSCREEN-10 Index-General HRQuality of life Index	Not applicable	Not applicable	Not applicable	Not applicable	Link
King’s Brief Interstitial Lung Disease Questionnaire (K-BILD)	PRO	Full	Adult Aged	Breathlessness and activities Chest symptoms Psychological	Interstitial lung disease	182095	Rare respiratory disease	ERN LUNG	Link
King's Health Questionnaire (KHQ)	PRO	Full	Adult	General health perceptions (1 item) Incontinence impact (1 item) Role limitations (2 items) Physical limitations (2 items) Social limitations (2 items) Personal relationships (3 items) Emotions (3 items) Sleep/Energy (2 items) Severity measures (5 items) Symptom Severity Scale (10 symptoms + 1 "other" symptom that may be specified by the responder)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
KLIK (using LAST thermometer, quality of life questionnaires etc)	PRO	No	No information	No information	Not applicable	Not applicable	Not applicable	Not applicable
Leicester Cough Questionnaire (LCQ)	PRO	Full	Adult	Physical (8 items) Psychological (7 items) Social (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Living with Pulmonary Fibrosis (L-PF) Impacts Questionnaire (L-PF Impacts)	PRO	Full	Adult Aged	shortness of breath, cough and fatigue	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Lupus Impact Tracker (LIT)	PRO	Full	Adult	Quality of life	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Lupus Patient-Reported Outcome tool (LupusPRO)	PRO	Full	Adult	Lupus symptoms (3 items) Cognition (2 items) Lupus medications (2 items) Procreation (2 items) Physical health (5 items) Pain-vitality (5 items) Emotional health (6 items) Body image (5 items) Desires/Goals (4 items) Social support (2 items) Coping (3 items) Satisfaction with care (4 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Lupus Quality Of Life (LupusQoL)	PRO	Full	Adult	Physical health (8 items) Emotional health (6 items) Body image (5 items) Pain (3 items) Planning (3 items) Fatigue (4 items) Intimate relationships (2 items) Burden to others (3 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Lymphoedema Functioning, Disability and Health Questionnaire for Lower Limb Lymphoedema (Lymph-ICF-LL)	PRO	Full	Adult Aged	Physical function Mental function General tasks/household activities Mobility activities Life domains/social life	Not applicable	Not applicable	Primary lymphedema	VASCERN	Link
Medication Adherence Rating Scale (MARS)	PRO	Full	Adult	Medication adherence behaviour (4 items) Subjects’ attitude to taking medication (4 items) Negative side-effects and attitudes to psychotropic medication (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Multidimensional Fatigue Inventory (MFI)	PRO	Full	Adult	General fatigue (4 items) Physical fatigue (4 items) Reduced activity (4 items) Reduced motivation (4 items) Mental fatigue (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Myasthenia Gravis Activities of Daily Living Profile (MG-ADL)	PRO	Full	Adult	Ocular functions (2 items) Oropharyngeal functions (3 items) Respiratory functions (1 item) Extremity functions (2 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Myasthenia Gravis Impairment Index (MGII)	PRO	Full	Adult	Patient reported items (22 items) Examination items (6 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Myasthenia Gravis Quality of Life 15-item Scale (MG-QoL15)	PRO	Full	Adult	Mobility (9 items) Symptoms (3 items) General contentment (1 item) Emotional well-being (2 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
MyeloProliferative Neoplasm - 10 (MPN-10)	PRO	No	No information	No information	Myeloproliferative neoplasm	98274	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN
Myositis Activities Profile (MAP)	PRO	Full	Adult	Movement activities Activities or moving around Self-care activities Domestic activities	Polymyositis	732	Rare systemic or rheumatologic disease Rare neuromuscular disease	ERN ReCONNET ERN EURO-NMD ERN RITA	Link
Myositis Activities Profile (MAP)	PRO	Full	Adult	Movement activities Activities or moving around Self-care activities Domestic activities	Dermatomyositis	221	Rare systemic or rheumatologic disease	ERN ReCONNET ERN RITA	Link
Myotonia behavioural scale (MBS)	PRO	Full	Adult	Myotonia	Congenital myotonia	206973	Rare neuromuscular disease	ERN EURO-NMD	Link
National Eye Institute Visual Function Questionnaire-25 (NEI-VFQ-25)	PRO	Full	Adult	Global vision rating (1 item) Difficulty with near vision activities (3 items) Difficulty with distance vision activities (3 items) Limitations in social functioning due to vision (2 items) Role limitations due to vision (2 items) Dependency to others due to vision (3 items) Mental health symptoms due to vision (4 items) Driving difficulties (3 items) Limitations with peripheral (1 item) Color vision (1 item) Ocular pain (2 items) General health (1 item) (treated as a stand-alone item: not included in the global score)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Night Vision Questionnaires (NVQ-10)	PRO	Full	Adult Aged	Vision impairment	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Neurofibromatosis 2 Impact on Quality of life (NFTI-QoL)	PRO	Full	Adult Aged	Quality of life (8 items)	Neurofibromatosis type 2	637	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN CRANIO	Link
Nontransfusion-dependent thalassemia - Patient-reported outcome (NTDT-PRO)	PRO	Full	Adult	Tiredness Weakness Shortness of Breath, with or without Physical Activity	Beta-thalassemia	848	Rare anemia	ERN EuroBloodNet	Link
Patient Acceptable Symptom State (PASS)	PRO	No	Adult	Patient Acceptable Symptom State (1 item)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA
Patient Health Questionnaire (PHQ)	PRO	Full	Adult	Eating disorder Somatoform disorder Depression Anxiety Alcohol usage Overall health	Not applicable	Not applicable	Not applicable	Not applicable	Link
Patient-Reported Outcomes – Common Terminology Criteria for Adverse Events (PRO-CTCAE)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Oral Gastrointestinal Respiratory Cardio/Circulatory Cutaneous Neurological Visual/Perceptual Attention/Memory Pain Sleep/Wake Mood Genitourinary Sexual Miscellaneous	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
Patient Activity of Daily Living scale for patients with Amyotrophic Lateral Sclerosis (PADL-ALS)	PRO	Full	Adult	Activity of Daily Living (15 items)	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Pediatric Charcot-Marie-Tooth Disease Quality of Life Outcome Measure (pCMT-QoL)	PRO	Full	Pediatric Adolescent	Physical complaints (fatigue, weakness, pain, or tremor, among others) Loss of function and ability to perform activities of daily living Physical activities	Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy	166	Rare peripheral neuropathy	ERN EURO-NMD	Link
Pediatric Outcome Data Collecting Instrument (PODCI)	PRO or ObsRO	Full	Pediatric Adolescent	Upper extremity function (8 items) Physical function & sports (13 items) Transfers & mobility (11 items) Comfort (painfree) (3 items) Happy & satisfied (5 items) Expectations (8 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link Link
Pediatric Quality of Life Inventory™ (PedsQL) 4.0 Generic Core Scales	PRO or ObsRO	Full	Pediatric Adolescent Adult	Physical functioning Emotional functioning Social functioning School functioning	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Cancer Module	PRO or ObsRO	Full	Pediatric Adolescent Adult	Pain and Hurt (2 items) Nausea (3 items) Procedural Anxiety (3 items) Treatment Anxiety (3 items) Worry (3 items) Cognitive Problems (Toddlers: 3 items Young children: 4 items Children, Teens and Young adults: 5 items) Perceived Physical Appearance (3 items) Communication (3 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
Pediatric Quality of Life Inventory™ Epilepsy Module (PedsQL™ Epilepsy Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Impact (Toddlers: 6 items Young children: 8 items All the others: 9 items) Cognitive functioning (Toddlers: 5 items All the others: 6 items) Sleep/fatigue (Toddlers: 2 items All the others: 3 items) Executive functioning (Toddlers: 4 items All the others: 6 items) Mood/behavior (5 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Pediatric Quality of Life Inventory™ Multidimensional Fatigue Scale (PedsQL™ Multidimensional Fatigue Scale)	PRO or ObsRO	Full	Pediatric Adolescent Adult	General fatigue (6 items) Sleep/Rest fatigue (6 items) Cognitive fatigue (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Neurofibromatosis Type 1 Module (PedsQL™ Neurofibromatosis Type 1 Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Skin itch bother Skin sensations Pain Pain impact Pain management Cognitive functioning Speech Fine motor Balance Vision Perceived physical appearance Communication Worry Treatment anxiety Medicines Stomach discomfort Constipation Diarrhea	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Pediatric Quality of Life Inventory™ 3.0 Neuromuscular Module (PedsQL™ 3.0 Neuromuscular Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	About My Neuromuscular Disease (17 items) Communication (0 to 3 items) About Our Family Resources (0 to 5 items)	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Pediatric Quality of Life Inventory™ 3.0 Neuromuscular Module (PedsQL™ 3.0 Neuromuscular Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	About My Neuromuscular Disease (17 items) Communication (0 to 3 items) About Our Family Resources (0 to 5 items)	Spinal Muscular Atrophy	70	Rare neuromuscular disease	ERN EURO-NMD	Link
Pediatric Quality of Life Inventory™ Stem Cell Transplant Module (PedsQL™ 1.0 Stem Cell Transplant Module)	PRO or ObsRO	Full	Pediatric Adolescent	Pain and hurt (2 items) Fatigue (5 items) Nausea (4 items) Worry/anxiety about disease/treatment (Toddlers: 2 Young Children, Children: 10 Teens: 12 items) Nutritional problems (5 items) Thinking/remembering (4 items) Communication about disease/treatment (3 items) Other complaints (6 items)	Graft versus host disease	39812	Rare disorder potentially indicated for transplant or complication after transplantation	ERN TRANSPLANT-CHILD	Link
Pediatric Quality of Life Inventory™ Transplant Module (PedsQL™ 3.0 Transplant Module)	PRO or ObsRO	Full	Pediatric Adolescent	About My Medicines I (9 items) About My Medicines II (8 items) My Transplant and Others (8 items) Pain and Hurt (3 items) Worry (7 items) Treatment Anxiety (4 items) How I Look (3 items) Communication (4 items)	Not applicable	Not applicable	Rare disorder potentially indicated for transplant or complication after transplantation	ERN TRANSPLANT-CHILD	Link
Pediatric Quality of Life Inventory™ Infant Scales™ (PedsQL™ Infant Scales™)	PRO or ObsRO	Full	Pediatric	Physical Functioning Physical Symptoms Emotional Functioning Social Functioning Cognitive Functioning	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pelvic pain and Urgency/Frequency symptom scale (PUF)	PRO	Full	Adult	Symptoms (7 items) Bother (4 items) + 1 item not scored on sexuality status	Interstitial cystitis	37202	Rare urogenital disease	ERN eUROGEN	Link
Penn Acoustic Neuroma Quality-of-Life scale (PANQOL)	PRO	Full	Adult	Hearing, Balance Facial expression Anxiety Vitality Pain General health	Vestibular schwannoma	252175	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN CRANIO	Link
Illness Cognition Questionnaire (ICQ)	PRO	Basic	Adult	Helplessness as a way of emphasizing the aversive meaning of the disease acceptance as a way to diminish the aversive meaning Perceived benefits as a way of adding a positive meaning to the disease	Not applicable	Not applicable	Not applicable	Not applicable	Link
Polycystic Liver Disease Questionnaire (PLD-Q)	PRO	Basic	Adult	Symptoms	Isolated polycystic liver disease	2924	Rare hepatic disease	ERN RARE-LIVER	Link
Perceived Social Support Questionnaire (F-SozU K-6)	PRO	Full	Pediatric Adolescent Adult	Social Support (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Primary Biliary Cholangitis Questionnaire (PBC-40)	PRO	Full	Adult Aged	Fatigue function Emotional function Social function Cognitive function General symptoms itch	Primary biliary cholangitis	186	Rare hepatic disease	ERN RARE-LIVER	Link
PROMIS - Fatigue 7a	PRO	Basic	Adult Aged	Fatigue	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Global Health (PROMIS-GH)	PRO	Full	Adult	Physical Health (4 items) Mental Health (4 items) + 2 single items about Social roles and General Health	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Pain interference 6a (PROMIS-PI 6a)	PRO	Full	Adult Aged	Activities of daily living and work cognition emotional function fun, recreation, and leisure sleep social function sitting, walking and standing	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Physical Function 8b (PROMIS-PF 8b)	PRO	Full	Adult	Physical functioning (10 items)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
PROMIS Sleep Disturbance (PROMIS-SD)	PRO	Full	Adult	Sleep disturbances quality Satisfaction	Not applicable	Not applicable	Rare sleep disorder	Not applicable	Link
PROMIS Pediatric Profile-25 v2.0	PRO	Full	Pediatric	Physical Function Mobility (4 items) Anxiety (4 items) Depression Symptoms (4 items) Fatigue (4 items) Peer Relationships (4 items) Pain Interference (4 items) + 1 single item assessing pain intensity	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS-29	PRO	Full	Adult	Physical Function (4 items) Anxiety (4 items) Depression (4 items) Fatigue (4 items) Sleep Disturbance (4 items) Ability to Participate in Social Roles and Activities (4 items) Pain Interference (4 items) + 1 single item assessing pain intensity	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS-57	PRO	Full	Adult	Physical Function (8 items) Anxiety (8 items) Depression (8 items) Fatigue (8 items) Sleep Disturbance (8 items) Ability to Participate in Social Roles and Activities (8 items) Pain Interference (8 items) + 1 single item assessing pain intensity	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pyruvate Kinase Deficiency Diary (PKDD)	PRO	Basic	Adult	Energy-related symptoms (Tiredness at its worst Tired after finishing daily activities Energy level at beginning of the day Energy level at end of the day) Other anemia symptoms (Bone pain Shortness of breath) Appearance (Jaundice)	Hemolytic anemia due to red cell pyruvate kinase deficiency	766	Rare anemia	ERN EuroBloodNet	Link
Pyruvate Kinase Deficiency Impact Assessment (PKDIA)	PRO	Basic	Adult	Activities of daily living (Household activities, Starting things you wanted to get done, Finishing things you wanted to get) Appearance (Bothered by appearance) Cognitive (Difficulty concentrating) Leisure (Negative impact on leisure activities) Social (Negative impact on social activities, Relationships with friends or family negatively affected, Receiving unwanted attention) Physical (Difficulty performing moderate (eg, walking on an incline or up stairs) physical activity, Needing additional rest or sleep) Work/school Work/school performance	Hemolytic anemia due to red cell pyruvate kinase deficiency	766	Rare anemia	ERN EuroBloodNet	Link
QUAlity of Life Assessment in Spina bifida for Teenagers, Childern and Adults (QUALAS-T, QUALAS-C, QUALAS-A)	PRO or ObsRO	Full	Pediatric Adolescent Adult	QUALAS-C-Esteem/Independence QUALAS-C-Bladder and Bowel QUALAS-A-Health/Relationships QUALAS-A-Esteem /Sexuality QUALAS-A-Bladder and Bowel QUALAS-T-Family/Independence QUALAS-T-Bladder and Bowel	Isolated spina bifida	823	Rare developmental defect during embryogenesis	ERN ITHACA	Link Link Link
Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA)	PRO	Full	Adult	Quality of life	Pituitary deficiency	101957	Rare endocrine disease	Endo-ERN	Link
Quality of life in epidermolysis bullosa questionnaire (QOLEB)	PRO	Full	Pediatric Adolescent	Quality of life	Epidermolysis bullosa simplex	304	Rare skin disease	ERN Skin	Link
Quality of Life Questionnaire for patients with Aplastic Anemia and/or Paroxysmal Nocturnal Hemoglobinuria (QLQ-AA/PNH)	PRO or ObsRO	Full	Adult	No information	Paroxysmal Nocturnal Hemoglobinuria	447	Rare anemia	ERN EuroBloodNet	Link
Rasch-built Overall Disability Scale (R-ODS)	PRO	Full	Adult	Activity Social participation	Chronic inflammatory demyelinating polyneuropathy	2932	Rare systemic or rheumatologic disease Rare peripheral neuropathy	ERN RITA ERN EURO-NMD	Link
Rasch-built Overall Disability Scale (R-ODS)	PRO	Full	Adult	Activity Social participation	Guillain-Barré syndrome	2103	Rare systemic or rheumatologic disease Rare peripheral neuropathy	ERN RITA ERN EURO-NMD	Link
Rasch-built Pompe-specific Activity scale (R-PAct)	PRO	Full	Adolescent Adult	Patient’s ability to carry out daily life activities Social participation	Glycogen storage disease due to acid maltase deficiency	365	Rare inborn error of metabolism Rare neuromuscular disease	MetabERN ERN EURO-NMD	Link
Rintala Score	PRO and ClinRO	No	Adult	fecal continence	Anorectal malformation	96346	Rare urogenital disease	ERN eUROGEN
Satisfaction with Appearance Scale (SWAP)	PRO	No	Adult	Subjective satisfaction with appearance social-behavioral impact of disfigurement	Not applicable	Not applicable	Not applicable	Not applicable
Scleroderma Health Assessment Questionnaire (SHAQ)	PRO	Full	Adult	Dressing and grooming (2 items) Arising (2 items) Eating (3 items) Walking (2 items) Hygiene (3 items) Reach (2 items) Grip (3 items) Common daily activities (3 items) Pain severity (1 item) Global Heath Assessment (1 item) + 5 VAS Gastrointestinal (GI) (1 item) daily activities-Pulmonary (1 item) Raynaud's phenomenon (RP) (1 item) Digital ulcer (1 item) Patient global assessment of disease severity (1 item)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Scleroderma Skin Patient Reported Outcome (SSPRO)	PRO	Full	Adult	Physical Effects, PE (5 items) Physical Limitations, PL (4 items) Emotional Effects, EE (6 items) Social Effects, SE (3 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Self Assessment of Communication (SAC)	PRO	No	Adult	Communication	Not applicable	Not applicable	Rare deafness	ERN CRANIO
Self-Efficacy for Managing Chronic Disease (SEMCD)	PRO	Full	Adult	Self-Efficacy (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
SF 36	PRO	Full	Adult	Physical Functioning (PF) (10 items) Role-Physical (RP) (4 items) Bodily Pain (BP) (2 items) General Health (GH) (5 items) Vitality (VT) (4 items) Social Functioning (SF) (2 items) Role-Emotional (RE) (3 items) Mental Health (MH) (5 items) +1 item on Reported Health Transition	Not applicable	Not applicable	Not applicable	Not applicable	Link
Sickle Cell Pain Diary	PRO	Basic	Adolescent Adult	Pain	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Simple Measure of Impact of Lupus Erythematosus in Youngsters©-Child Report (SMILEY©-Child Report)	PRO	Full	Pediatric Adolescent	Effect on self (5 items) Limitations (8 items) Social (4 items) Burden of Systematic Lupus Erythematosus (7 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Sino-Nasal Outcome Test (SNOT-20)	PRO	Full	Adult	Nasal symptoms (5 items) Sleep function (4 items) Ear symptoms (3 items) General symptoms (5 items) Emotional consequences (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Short Inflammatory Bowel Disease Questionnaire (SIBDQ)	PRO	Full	Adult	Bowel symptoms (3 items) Systemic symptoms (2 items) Emotional function (3 items) Social function (2 items)	Not applicable	Not applicable	Rare inflammatory bowel disease	ERNICA	Link
Somatic Symptom Disorder - B Criteria Scale (SSD-12)	PRO	Full	Adult	Somatic Symptom Disorder-Cognitive Somatic Symptom Disorder-Affective Somatic Symptom Disorder-Behavioral aspects	Not applicable	Not applicable	Not applicable	Not applicable	Link
Somatic symptom scale-8 (SSS-8)	PRO	Full	Adult	Somatic symptom burden	Not applicable	Not applicable	Not applicable	Not applicable	Link
Specific Thalassemia Quality of Life Instrument (STQOLI)	PRO	Full	Adult	Disease and symptoms (12 items) Chelation therapy (13 items: (5 items per os chelation therapy users, 5 items for subcutaneous chelation therapy users, and 3 common items)) Psychosocial impact (10 items) Transfusion impact (5 items)	Beta-thalassemia	848	Rare anemia	ERN EuroBloodNet	Link
St George’s Respiratory Questionnaire (SGRQ)	PRO	Full	Adult	Symptoms Activity Impacts on daily life	Sarcoidosis	735	Rare respiratory disease	ERN LUNG	Link
Systemic Lupus Activity Questionnaire (SLAQ)	PRO	Full	Adult	Weight loss fatigue fevers oral ulcers malar rash photosensitivity vasculitis other rashes alopecia lymphadenopathy dyspnea chest pain Raynaud’s phenomenon abdominal pain paresthesia seizures stroke memory loss depression headaches myalgias muscle weakness arthralgias and joint swelling	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Lupus Erythematosus Quality of Life (L-QoL)	PRO	Full	Adolescent Adult	Systemic Lupus Erythematosus impact	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Lupus Erythematosus-Specific Quality-Of-Life scale (SLEQOL)	PRO	Full	Adult	Physical functioning (6 items) Activities (9 items) Symptoms (8 items) Treatment (4 items) Mood (4 items) Self-image (9 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
EULAR Systemic Sclerosis Impact of Disease (ScleroID)	PRO	Full	Adult	Raynaud’s Phenomenon Hand function Pain Fatigue (being tired physically, but also mental fatigue, lack of energy) Upper gastrointestinal tract symptoms (e.g. swallowing difficulties, reflux, vomiting) Lower gastrointestinal tract symptoms (e.g. bloating, diarrhea, constipation, anal incontinence) Limitations of life choices and activities (e.g. social life, personal care, work) Body mobility Breathlessness Digital ulcers	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Sclerosis Quality of Life Scale (SSc-QoL)	PRO	Basic	Adult	function emotional sleep social pain	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Sclerosis Questionnaire (SySQ)	PRO	Basic	Adult	General symptoms musculoskeletal symptoms cardiopulmonary symptoms digestive tract symptoms	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Treatment Expectation Questionnaire (TEX-Q)	PRO	Full	Adult	Treatment Expectation: Benefit expectations Harm expectations Process expectations and behavioural control expectations	Not applicable	Not applicable	Not applicable	Not applicable	Link
Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL)	PRO	Full	Adult Aged	Impact of immunosuppressive therapy (17 items)	Autoimmune bullous skin disease	79669	Rare skin disease	ERN Skin	Link
Treatment Satisfaction Questionnaire for Medication - 9 items (TSQM-9)	PRO	Full	Adult	Effectiveness (3 items) Convenience (3 items) Global satisfaction scale (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
University of California, Los Angeles Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument (UCLA SCTC GIT)	PRO	Basic	Adult	reflux distention/bloating diarrhea fecal soilage emotional well-being and social functioning	Scleroderma	801	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
The University of California, San Diego Shortness of Breath Questionnaire (SOBQ)	PRO	Full	Adolescent Adult	Severity of shortness of breath during specific ADLs (21 items) + 3 single items about limitations in daily life	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Upper Extremity Functional Index (UEFI)	PRO	Full	Adult	Any of your usual work, housework, or school activities Your usual hobbies, recreational or sporting activities Lifting a bag of groceries to waist level Lifting a bag of groceries above your head Grooming your hair Pushing up on your hands (eg, from bathtub or chair) Preparing food (eg, peeling, cutting) Driving Vacuuming, sweeping or raking Dressing Doing up buttons Using tools or appliances Opening doors Cleaning Tying or lacing shoes Sleeping Laundering clothes (eg, washing, ironing, folding) Opening a jar Throwing a ball Carrying a small suitcase with your affected limb	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Urethral stricture surgery patient-reported outcome measure (USS PROM)	PRO	Full	Adult	Lower urinary tract symptoms (LUTS) (7 items) LUTS-specific quality of life (1 item) Overall HRQuality of life (6 items) Patient satisfaction (2 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Urethral Stricture Symptoms and Impact Measure (USSIM)	PRO	Full	Adult	voiding sexual function	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Vision Impairment in Low Luminance Questionnaire (VILLQ)	PRO	No	Adult	Emotional well-being (4 items) reading and accessing information subscale (20 items) mobility and safety subscale (13 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE
Vision Related Activities of Daily Living (V-ADL)	PRO	No	No information	No information	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE
Vision-related Quality of Life Questionnaire for Children and Young People (VQoL-CYP)	PRO	Basic	Adolescent Adult	Quality of life	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Visual Function Index (VF-14)	PRO	Full	Adult	Visual impairment (18 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Viswanathan 10 questionnaire	PRO	No	Adult	Visual Function (10 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE
Work Ability Index (WAI)	PRO and ClinRO	Full	Adult	Work ability of employees	Not applicable	Not applicable	Not applicable	Not applicable	Link
Work Environment Impact Scale (WEIS)	PRO	No	Adult	Physical space objects used in work social groups norms and perceptions of how work tasks are to be carried out	Not applicable	Not applicable	Not applicable	Not applicable
Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI:GH 2.0)	PRO	Full	Adult	Work (5 items) Daily activities (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Patient Activation Measure (PAM)	PRO	Basic	Adult Aged	Self-manage Collaborate with Provider Maintain Function /Prevent Declines Access Appropriate and HighQuality Care	Not applicable	Not applicable	Not applicable	Not applicable	Link
Health Education Impact Questionnaire (heiQ™)	PRO	Full	Adult	Health directed behaviour (4 items) Positive and active engagement in life (5 items) Emotional well-being (6 items) Self monitoring and insight (7 items) Constructive attitudes and approaches (5 items) Skill and technique acquisition (5 items) Social integration and support (5 items) Health service navigation (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Cancer Module (PedsQL™ Cancer Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Pain and Hurt (2 items) Nausea (3 items) Procedural Anxiety (3 items) Treatment Anxiety (3 items) Worry (3 items) Cognitive Problems (Toddlers: 3 items Young children: 4 items Children, Teens and Young adults: 5 items) Perceived Physical Appearance (3 items) Communication (3 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
SF-12	PRO	Full	Adult	Physical functioning (PF) (2 items) Role physical (RP) (2 items) Bodily pain (BP) (1 item) General health (GH) (1 item) Vitality (VT) (1 item) Social functioning (SF) (1 item) Role emotional (RE) (2 items) Mental health (MH) (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Myasthenia Gravis Composite (MGC)	PRO	Full	Adult	ocular (physician examination - 3 items) bulbar (patient history - 3 items) respiratory (patient history - 1 item) neck (physician examination - 1 item) limb (physician examination - 2 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Ocular Treatment Index (OTI)	PRO	No	Caregiver	No information	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE
Multidimensional Assessment of Fatigue (MAF)	PRO	Full	Adult	Degree and severity Distress that it causes Timing of fatigue (over the past week, when it occurred and any changes) Impact on various activities of daily living (household chores, cooking, bathing, dressing, working, socializing, sexual activity, leisure and recreation, shopping, walking, and exercising)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
EORTC QLQ - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (6 items) Physical condition/Fatigue (4 items) Worries/Fears health and functioning (7 items)	Hodgkin lymphoma	98293	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
EORTC QLQ - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (6 items) Physical condition/Fatigue (4 items) Worries/Fears health and functioning (7 items)	B-cell chronic lymphocytic leukemia	67038	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
EORTC QLQ - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (6 items) Physical condition/Fatigue (4 items) Worries/Fears health and functioning (7 items)	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Brief Pain Inventory - Short form (BPI-SF)	PRO	Full	Adult	*Pain severity (4 items) Interference with physical function Interference with psychological functions/sleep Comparison of pain with other minor aches and pain (1 item) Pain medication or treatment used (1 item) Effectiveness of pain relief measures (1 item) Body figure (front and back) to indicate location of pain (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Columbia-Suicide Severity Rating Scale (C-SSRS)	PRO and ClinRO	Full	Adult	Severity of Ideation (5 items) Intensity of Ideation (5 items for adults / 1 item for children) Suicidal Behavior (5 or 6 items depending on the version) Suicidal Behavior Lethality (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pulmonary Arterial Hypertension-Symptoms and Impact Questionnaire (PAH-SYMPACT)	PRO	Full	Adult	Cardiopulmonary Symptoms (6 items) Cardiovascular Symptoms (5 items) 1 single item about oxygen use Physical Impacts (7 items) Cognitive/Emotional Impacts (4 items)	Pulmonary arterial hypertension	182090	Rare respiratory disease	ERN LUNG	Link
Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR)	PRO	Full	Adult	Overall symptoms [impairment]: 25 items Energy: 10 items Breathlessness: 8 items Mood (7 items) Functioning: 15 items Quality of life: 25 items	Not applicable	Not applicable	Rare pulmonary hypertension	ERN LUNG	Link
Minnesota Living with Heart Failure Questionnaire (MLHF)	PRO	Full	Adult	Physical functioning (8 items) Emotional functioning (5 items) Plus 8 items not included in the subscales but incorporated in the total score	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
emPHasis-10	PRO	Full	Adult	Quality of life (10 items)	Not applicable	Not applicable	Rare pulmonary hypertension	ERN LUNG	Link
World Health Organization Quality of Life assessment instrument (WHOQOL-BREF)	PRO or ObsRO	Full	Adult	Physical health Psychological Social relationships Environment	Not applicable	Not applicable	Not applicable	Not applicable	Link
Facioscapulohumeral muscular dystrophy-Health Index (FSHD-HI)	PRO	Full	Adult	Mobility and ambulation Fine motor and distal arm weakness Proximal upper extremity and shoulder limitation Trunk weakness FSHD-specific activity impairment Emotional distress FSHD-specific impaired body image Cognitive impairment Social role dissatisfaction Social role limitations Fatigue Pain Communication difficulties/facial weakness Gustatory dysfunction	Facioscapulohumeral dystrophy	269	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item Bank v1.0 - Fatigue (Neuro-QoL Item Bank v1.0 - Fatigue)	PRO	Full	Adult	Fatigue	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Living with Idiopathic Pulmonary Fibrosis (L-IPF) Impacts Questionnaire (L-IPF Impacts)	PRO	Full	Adult Aged	Quality of life (20 items)	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Living with Idiopathic Pulmonary Fibrosis (L-IPF) Symptoms Questionnaire (L-IPF Symptoms)	PRO	Full	Adult Aged	Dyspnea (Shortness of Breath) (7 items) Cough (5 items) Energy (3 items)	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Juvenile Arthritis Disease Activity Score (JADAS-10/71/27)	PRO or ObsRO and ClinRO and Biomarker	Full	Pediatric Adolescent	Joint counts Physician's and Patient's/Parent's subjective assessment and ESR (Erythrocyte Sedimentation Rate)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link Link
ANCA-Associated Vasculitis Patient-Reported Outcomes (AAV-PRO)	PRO	Full	Adult	Organ-specific symptoms (5 items) Systemic symptoms (4 items) Treatment side effects (5 items) Social and emotional impact (6 items) Concerns about the futur (5 items) Physical function (4 items)	Anti-neutrophil cytoplasmic antibody-associated vasculitis	156152	Rare systemic or rheumatologic disease	ERN RITA	Link
MyeloProliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-SAF TSS)	PRO	Full	Adult	Early satiety Abdominal pain Abdominal discomfort Inactivity Headache Concentration problem Dizziness Numbness Insomnia Sad Mood Sexuality Problems Cough Night Sweats Itching Bone Pain Fever Weight Loss Quality of Life Fatigue	Myeloproliferative neoplasm	98274	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Pulmonary Arterial Hypertension Quality of Life (PAHQoL)	PRO	Full	Adult	Impairment (41 items) Functioning (17 items) Quality of life (36 items)	Pulmonary arterial hypertension	182090	Rare pulmonary hypertension	ERN LUNG	Link
Amyotrophic Lateral Sclerosis Assessment Scales - 40 items (ALSAQ-40)	PRO	Full	Adult Aged	Eating and Drinking Communication ADL/independence Physical mobility Emotional Functioning	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Oswestry Disability Index (ODI)	PRO	Full	Adult	Pain (10 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Quality of Life in Occupational Therapy (Qual-OT)	PRO	Full	Adult	Closeness to others Self-achievement Health / Activity level Positive feelings Outlook Spiritual life Routine behavior	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Life Satisfaction Index for Adolescents (LSIA)	PRO	Full	Adolescent	General Well-Being (7 items) Interpersonal Relationships (7 items) Personal Development (7 items) Personal Fulfilment (7 items) Leisure and Recreation (7 items)	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Myasthenia Gravis Questionnaire (MGQ)	PRO	Full	Adult	Generalized domain (items 1-6, 8-12, 16): 21 items Bulbar domain (items 7,15): 2 items Ocular domain (items 13,14): 2 items	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Ferrans and Powers Quality of Life Index (QLI)	PRO	Full	Adult	Health and Functioning Psychological/Spiritual Social and Economic Family	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
QUALIVEEN (QUALIVEEN)	PRO	Full	Adult	Limitations (9 items) Constraints (8 items) Fears (8 items) Feelings (5 items) Quality of Life: 9 items	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Hemophilia-specific health-related quality of life questionnaire (A36 Hemofilia-QoL®)	PRO	Full	Adult	Physical health (8 items) Daily activities (4 items) Joint damage (3 items) Pain (2 items) Treatment satisfaction (2 items) Treatment difficulties (4 items) Emotional functioning (5 items) Mental health (3 items) Relationships and social activity (5 items) A36 Hemofilia-Quality of life Global Index	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
NERN eUROGENic Bowel Dysfunction score (NBD score)	PRO	Full	Adult	Frequency of bowel movements Headache, perspiration or discomfort before or during defecation Tablets against constipation Drops against constipation Time used for each defecation Frequency of digital stimulation or evacuation Frequency of faecal incontinence Medication against faecal incontinence Flatus incontinence Perianal skin problems	Spinal cord injury	90058	Rare neurologic disease	Not applicable
Quality of Life E (QOL-E)	PRO	Full	Adult	General Health status / introduction (2 items, no dimension) Physical (4 items) Functional (3 items) Social (4 items) Sexual (2 items) Fatigue(7 items) Specific: MDS-related (7 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Systemic Lupus Erythematosus Quality of Life Questionnaire (LQoL)	PRO	Full	Adult	Quality of life (25 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Haemophilia age group-specific Quality of life questionnaire (QUAL HEMO)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Daily life and plans (15 items) Emotions and relations with others (11 items) Constraints/ Constraints linked to treatment (6 items) Acceptation (3 items) Relevance of information received (4 items) Reasons for concern (5 items) Professional life (6 items) Compliance (3 items) Physical limitations or limitations related (7 items) Awareness of disease (6 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Perception of Anticoagulant Treatment Questionnaire (PACT-Q)	PRO	Full	Adult	expectations of patients regarding their anticoagulant treatment Convenience (11 items) Burden of disease and treatment (2 items) Anticoagulant treatment satisfaction (7 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Quality of Life questionnaire for Patients with Atrial Fibrillation (AF-QOL18)	PRO	Full	Adult	Psychological (7 items) Physical (8 items) Sexual activity (3 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Huntington's Disease health-related Quality of Life questionnaire (HDQoL©)	PRO or ObsRO	Full	Adult	Physical and Cognitive Emotions and Self Services Cognitive Hopes and Worries Services Physical and Functional Mood State Self and Vitality	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Oral Health Related Quality of Life for patients with Hypodontia (OHRQoL Hypodontia)	PRO	Full	Pediatric Adolescent	No information	Anodontia	99797	Rare odontologic disease	ERN CRANIO	Link
Myelofibrosis Symptom Assessment Form (MFSAF)	PRO	Full	Adult	MF-related symptoms	Myeloproliferative neoplasm	98274	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Hemophilia Well-Being Index (HWBI)	PRO	Full	Adult	Well-being (8 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Self-administered Computerized version of the BDI-TDI (SAC BDI-TDI)	PRO	Full	Adult	BDI-Functional impairment BDI-Magnitude of task BDI-Magnitude of effort TDI-Functional impairment TDI-Magnitude of task TDI-Magnitude of effort	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Pediatric Quality of Life Inventory™ Sickle Cell Disease Module (PedsQL™ Sickle Cell Disease Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Pain and Hurt (9 items) Pain Impact (10 items) Pain Management and Control (2 items) Worry I (5 items) Worry II (0 or 2 items) Emotions (2 items) Treatment (6 or 7 items) Communication I (3 items) Communication II (3 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Pediatric Quality of Life Inventory™ Duchenne Muscular Dystrophy Module (PedsQL™ Duchenne Muscular Dystrophy Module)	PRO or ObsRO	Full	Pediatric Adolescent	Daily activities Treatment Worry Communication	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Center for Neurologic Study-Lability Scale (CNS-LS)	PRO	Full	Adult	Labile laughter (4 items) Labile tearfulness (3 items)	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Phenylketonuria impact and treatment Quality Of Life Questionnaire (PKU-QOL)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Self-rated health status Child health status Headaches Stomach aches Tiredness Irritability/ Anger Aggressiveness Moodiness Sadness Anxiety Lack of concentration Slow thinking Trembling hands Emotional impact of PKU Practical impact of PKU Social impact of PKU Anxiety Financial impact of PKU Information on PKU Adherence to Phe-free protein supplements Management of Phe-free protein supplements Practical impact of Phe-free protein supplements Guilt if poor adherence to Phe-free protein supplements Impact of Phe-free protein supplements on family Taste - Phe-free protein Supplements Dietary protein restriction	Phenylketonuria	716	Rare inborn error of metabolism	MetabERN	Link
Cystic Fibrosis Respiratory Symptom Diary (CFRSD)	PRO	Full	Adolescent Adult	Symptoms (8 items) Emotional impact (4 items) Activity impact (4 items)	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
National Comprehensive Cancer Network Functional Assessment of CancerTherapy - Lymphoma Symptom lndex-18 (NFLymSI-18)	PRO	Full	Adult	Physical (9 items) Emotional (4 items) Treatment side effects subscale (3 items) Function and well-being subscale (2 items)	Lymphoma	223735	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Functional Assessment of Cancer Therapy - Lymphoma (FACT-Lym)	PRO	Full	Adult	Physical Well-being (7 items) Social / Family Well-being (7 items) Emotional Well-being (6 items) Functional Well-being (7 items) lymphoma-specific concerns (15 items)	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ)	PRO	Full	Adult Aged	Symptom Interference Treatment Convenience Injection Site Interference GI Interference Treatment Satisfaction and Emotional Reaction	Acromegaly	963	Rare endocrine disease	Endo-ERN	Link
Daily Health Assessment Forms (DHAFs)	PRO	Full	Adult	rash fatigue joint pain feeling of fever/chills and eye redness/pain	Cryopyrin-associated periodic syndrome	208650	Rare systemic or rheumatologic disease	ERN RITA	Link
Work Productivity and Activity Impairment: Lupus (WPAI:Lupus)	PRO	Full	Adult	absenteeism presenteeism overall work impairment activity impairment	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic lupus erythematosus Symptom Checklist (SSC)	PRO	Full	Adult	Symptoms (39 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Body Concealment Scale for Scleroderma (BCSS)	PRO	Full	Adult	Body Concealment (9 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
HemoLatin-QoL (HemoLatin-QoL)	PRO	Full	Adult	Pain (3 items) Physical functioning (6 items) Emotional functioning (6 items) Social functioning (5 items) Mental healh (4 items) Environment conditions (3 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Mastocytosis Quality of Life Questionnaire (MC-QoL)	PRO	Full	Adult	Symptoms (9 items) Social life/functioning (9 items) Emotions (6 items) Skin (3 items)	Systemic mastocytosis	2467	Rare tumor	ERN PaedCan ERN EURACAN ERN EuroBloodNet	Link
Angioedema Activity Score (AAS)	PRO	Full	Adult	Disease activity (6 items)	Hereditary angioedema	91378	Rare systemic or rheumatologic disease	ERN RITA	Link
Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso)	PRO or ObsRO	Full	Adult	Physical (6 items) Symptoms (5 items) Global Distress (1 item) Functional (1 item) Global Activity Status Overall Quality of Life (1 item) Global Quality of Life	Pleural mesothelioma	50251	Rare tumor	ERN EURACAN ERN LUNG	Link
Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale (ADPKD-PDS)	PRO	Full	Adolescent Adult	Dull kidney pain (8 items) Sharp/Severe kidney pain (4 items) Fullness/Discomfort (8 items)	Autosomal dominant polycystic kidney disease	730	Rare renal disease	ERN ERKNet	Link
Autosomal Dominant Polycystic Kidney Disease Impact Scale (ADPKD-IS)	PRO	Full	Adult	Physical (7 items) Fatigue (3 items) Emotional (4 items) + 4 unscored questions	Autosomal dominant polycystic kidney disease	730	Rare renal disease	ERN ERKNet	Link
Autosomal Dominant Polycystic Kidney Disease Urinary Impact Scale (ADPKD-UIS)	PRO	Full	Adult	Urinary frequency (4 items) Urinary urgency (4 items) Nocturia (3 items)	Autosomal dominant polycystic kidney disease	730	Rare renal disease	ERN ERKNet	Link
Bladder Pain/Interstitial Cystitis Symptom Score (BPIC-SS)	PRO	Full	Adult	Persistent urge to urinate (1 item) Necessity to urinate driven by bladder pain (2 items) Bother associated with daytime and nighttime frequency (2 items) Bladder pain and frequency (3 items)	Interstitial cystitis	37202	Rare urogenital disease	ERN eUROGEN	Link
Patient Perception and Preference for Haemophilia Treatment (HaemoPREF)	PRO	Full	Adult	Ease of using clotting factor treatment (4 items) Impact of clotting factor treatment (2 items) Risk associated with clotting factor treatment (3 items) Burden of clotting factor treatment (3 items) Influence of others on treatment choices (2 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Craig Handicap Assessment and Reporting Technique and Craig Handicap Assessment and Reporting Technique - Short form (CHART and CHART-SF)	PRO or ObsRO	Full	Adolescent Adult	Physical independence (2 items) Cognitive independence (10 or 2 items) Mobility (9 or 3 items) Occupation (8 or 6 items) Social Integration (4 or 2 items) Economic Self-sufficiency (5 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Atrial Fibrillation Impact Questionnaire (AFImpact)	PRO	Full	Adult	Vitality (7 items) Emotional distress (8 items) Sleep (3 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Functional Assessment of Cancer Therapy-Esophageal (FACT-E)	PRO	Full	Adult	Physical Well-being (8 items) Social / Family Well-being (7 items) Relationship with doctor (2 items) Emotional Well-being (6 items) Functional Well-being (7 items) concern items (17 items)	Carcinoma of esophagus	70482	Rare tumor	ERN EURACAN	Link
Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT)	PRO	Full	Adult	Symptoms (4 items) Daily Activities (8 items) Treatment Concern (6 items) Treatment Satisfaction (2 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
MPS Health Assessment Questionnaire (MPS-HAQ)	PRO or ObsRO	Full	Adolescent Adult	Self-care (27 item) Eating/drinking (7 items) Dressing (9 items) Hygiene (11 items) Bathing (3 items) Grooming (2 items) Toothbrushing (2 items) Toileting (4 items) Mobility (12 items) Movement (7 items) Walking (3 items) Stair climbing (2 items) Caregiver assistance (13 items)	Mucopolysaccharidosis	79213	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Quality of Life in Neurological Disorders (Neuro-QOL)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Not applicable	Not applicable	Rare epilepsy Rare neurodegenerative disease	ERN EpiCARE ERN-RND	Link
Quality of Life in Neurological Disorders (Neuro-QOL)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders (Neuro-QOL)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Not applicable	Not applicable	Rare epilepsy Rare neurodegenerative disease	ERN EpiCARE ERN-RND	Link
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF)	PRO or ObsRO	Full	Adult	Anxiety Depression Fatigue Upper extremity function-Fine motor, ADL Lower extremity function-mobility Cognitive function Emotional and behavioural dyscontrol Positive affect and well-being Sleep disturbance Ability to participate in social roles and activities Satisfaction with Social Roles and Activities Stigma Communication End of life concerns Bowel function Urinary/bladder function Sexual function	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Spinal Cord Injury – Quality of Life (SCI-QOL)	PRO	Full	Adult	Bladder Management Difficulties (15 items) Bladder Complications (5 items) Bowel Management Difficulties (26 items) Pressure Ulcers (14 items) Pain Interference (25 items) Pan Behavior (7 items) Positive Affect & Well-being (28 items) Depression (28 items) Anxiety (25 items) Stigma (23 items) Resilience (21 items) Grief/Loss (17 items) Self-Evaluation (23 items) Psychological Trauma (19 items) Ability to Participate in Social Roles & Activities (27 items) Satisfaction with Social Roles & Activities (35 items) Independence/Autonomy (8 items) Ambulation (39 items) Basic Mobility (54 items) Fine Motor Function (36 items) Self Care (90 items) Wheelchair Mobility (56 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
HD-PRO-TRIAD™ (HD-PRO-TRIAD™)	PRO	Full	Caregiver Adult	Cognition (14 items) Emotional and Behavioral Dyscontrol (14 items) Motor Function (19 items)	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Hemophila-specific Quality of Life Questionnaire for Adults (Haemo-QoL-A)	PRO	Full	Adult	Physical functioning (9 items) Role functioning (11 items) Worry (5 items) Consequences of bleeding (7 items) Emotional Impact (6 items) Treatment concerns (3 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Haemo-SYM (Haemo-SYM)	PRO	Full	Adult	Pain (11 items) Bleeds (6 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Family Burden Ichthyosis questionnaire (FBI)	PRO	Full	Adult	Pain Daily life Familial and personal relationship Work Psychological impact	Ichthyosis	79354	Rare skin disease	ERN Skin	Link
Hand Disability In Systemic Sclerosis - Digital Ulcers (HDISS-DU)	PRO	Full	Adult	impact of systemic sclerosis-related digital ulcers on hand function	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Spinal Cord Injury – Quality of Life Short form (SCI-QOL SF)	PRO	Full	Adult	Bladder Management Difficulties (8 items) Bladder Complications (5 items) Bowel Management Difficulties (9 items) Pressure Ulcers (7 items) Pain Interference (10 items) Pan Behavior (7 items) Positive Affect & Well-being (10 items) Depression (10 items) Anxiety (9 items) Stigma (10 items) Resilience (8 items) Grief/Loss (9 items) Self-Evaluation (8 items) Psychological Trauma (8 items) Ability to Participate in Social Roles & Activities (10 items) Satisfaction with Social Roles & Activities (10 items) Independence/Autonomy (8 items) Ambulation (11 items) Basic Mobility (11 items) Fine Motor Function (9 items) Self Care (11 items) Wheelchair Mobility (10/9 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Pediatric version of the Quality of Life in Neurological Disorders (Pediatric Neuro-QOL)	PRO	Full	Pediatric	Anxiety (19 items) Depression (17 items) Anger (8 items) Fatigue (13 items) Upper extremity function (20 items) Lower extremity function (20 items) Applied cognition: General concerns (14 items) Sociability (Social relation – interaction with peers) (16 items) Stigma (18 items) Pain (10 items)	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Pediatric version of the Quality of Life in Neurological Disorders Short Form (Pediatric Neuro-QOL SF)	PRO	Full	Pediatric	Anxiety (8 items) Depression (8 items) Anger (8 items) Fatigue (11 items) Upper extremity function (20 items) Lower extremity function (20 items) Applied cognition: General concerns (7 items) Sociability (Social relation – interaction with peers) (8 items) Stigma (8 items) Pain (10 items)	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Mycosis Fungoides / Sezary Syndrome - Cutaneous T-cell lymphoma Quality of life (CTCL-QoL)	PRO	Full	Adult	Quality of life (12 items)	Sézary syndrome	3162	Rare tumor	ERN PaedCan ERN EURACAN ERN EuroBloodNet	Link
Huntington's Disease health-related Quality of LIFE (HDQLIFE)	PRO	Full	Adult	Anxiety Anger Depression Emotional & Behavioral Dyscontrol Positive Affect and Well-Being Lower Extremity Function/Mobility Upper Extremity Function/ADLs Applied Cognition-Executive Functioning Applied Cognition-General Concerns Stigma Ability to Participate in Social Roles and Activities Satisfaction with Social Roles and Activities Chorea (34 items) Difficulties with Speech (27 items) Difficulties with Swallowing (15 items) End of Life Issues Concern with Death and Dying (12 items) Meaning and Purpose (4 items)	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® (ASCQ-Me SF®)	PRO	Full	Adult	Pain episode (5 items) Frequency (2 items) Severity (3 items) Emotional impact (5 items) Social functioning impact (5 items) Pain impact (5 items) Stiffness impact (5 items) Sleep impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
M.D. Anderson Symptom Inventory - Acute Myeloid Leukemia / Myelodysplastic Syndromes (MDASI-AML/MDS)	PRO	Full	Adult	Pain Fatigue Nausea Disturbed sleep Distress/Feeling upset Shortness of breath Difficulty remembering Lack of appetite Drowsiness Dry mouth Sadness Vomiting Numbness/tingling Walking Activity Working (including housework) Relations with other people Enjoyment of life Mood AML/MDS specific symptoms (4 items) Feeling of malaise (not feeling well) Diarrhea (loose stools) Muscle weakness Skin problems	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
M.D. Anderson Symptom Inventory - Acute Myeloid Leukemia / Myelodysplastic Syndromes (MDASI-AML/MDS)	PRO	Full	Adult	Pain Fatigue Nausea Disturbed sleep Distress/Feeling upset Shortness of breath Difficulty remembering Lack of appetite Drowsiness Dry mouth Sadness Vomiting Numbness/tingling Walking Activity Working (including housework) Relations with other people Enjoyment of life Mood AML/MDS specific symptoms (4 items) Feeling of malaise (not feeling well) Diarrhea (loose stools) Muscle weakness Skin problems	Acute myeloid leukemia	519	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Quality of Life in Myelodysplasia Scale (QUALMS)	PRO	Full	Adult Aged	Physical burden (QUALMS-P) (14 items) Benefit finding (QUALMS-BF)(disease information and uncertainty) (3 items) Emotional Burden (QUALMS-E) (16 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Functional Assessment of Cancer Therapy - Multiple Myeloma (FACT-MM)	PRO	Full	Adult	Physical Well-being (7 items) Social / Family Well-being (7 items) Emotional Well-being (6 items) Functional Well-being (7 items) Multiple Myeloma Scale (14 items)	Multiple Myeloma	29073	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
MD Anderson Symptom Inventory - Chronic Graft-Versus-Host Disease module (MDASI-CGVHD)	PRO	Full	Adult	core symptoms (symptoms common across cancer types and treatments, 13 items) chronic Graft-Versus-Host Disease-specific symptoms (cGVHD, 5 items) + Interference with patient's daily functioning (6 items)	Graft versus host disease	39812	Rare disorder potentially indicated for transplant or complication after transplantation	Not applicable	Link
MD Anderson Symptom Inventory - Gastrointestinal Stromal Tumor Module (MDASI-GIST)	PRO	Full	Adult	core symptoms (symptoms common across cancer types and treatments, 13 items) Gastrointestinal Stromal Tumors-specific symptoms (9 items) + Interference with patient's daily functioning (6 items)	Gastrointestinal stromal tumor	44890	Rare tumor	ERN EURACAN	Link
MD Anderson Symptom Inventory - Lung Cancer Module (MDASI-LC)	PRO	Full	Adult	Core symptoms (symptoms common across cancer types and treatments, 13 items) Lung Cancer-specific symptoms (3 items) + Interference with patient's daily functioning (6 items)	Small cell lung cancer	70573	Rare tumor	ERN EURACAN	Link
MD Anderson Symptom Inventory - Multiple Myeloma Module (MDASI-MM)	PRO	Full	Adult	Core symptoms (symptoms common across cancer types and treatments, 13 items) Multiple Myeloma-specific symptoms (7 items) + Interference with patient's daily functioning (6 items)	Multiple Myeloma	29073	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
MD Anderson Symptom Inventory - Thyroid Cancer Module (MDASI-Thy)	PRO	Full	Adult	Core symptoms (symptoms common across cancer types and treatments, 13 items) thyroid cancer-specific symptoms (6 items) + Interference with patient's daily functioning (6 items)	Thyroid carcinoma	100088	Rare tumor Rare endocrine disease	ERN EURACAN ERN PaedCan Endo-ERN	Link
Patient Preference Questionnaire (PPQ)	PRO	Full	Adult	Patient Preference/Mode of administration (4 items)	Follicular lymphoma	545	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
Patient Preference Questionnaire (PPQ)	PRO	Full	Adult	Patient Preference/Mode of administration (4 items)	B-cell non-Hodgkin lymphoma	171915	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Rituximab Administration Satisfaction Questionnaire (RASQ)	PRO	Full	Adult	Treatment satisfaction (2 items) Convenience (3 items) Physical impact (3 items) Psychological impact (5 items) Impact on activities of daily living (2 items) + 4 descriptive items scored separately	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Primary Sclerosing Cholangitis - PRO (PSC PRO)	PRO	Full	Adult	PSC Symptoms (13 items) Physical Function (4 items) Activities of Daily Living (4 items) Work Productivity (5 items) Role Function (4 items) Emotional Impact (4 items) Social/Leisure Impact (4 items) Quality of Life (4 items)	Primary sclerosing cholangitis	171	Rare hepatic disease	ERN RARE-LIVER	Link
Hereditary Angioedema Patient Reported Outcomes (HAE PRO)	PRO	Full	Adult	HAE symptoms, impacts, treatment requirements, healthcare resource use and loss of productivity caused by HAE attacks	Hereditary angioedema	91378	Rare systemic or rheumatologic disease	ERN RITA	Link
Spinal Cord Injury - Functional Index (SCI-FI)	PRO	Full	Adult	Ambulation (39 items) Basic Mobility (54 items) Fine Motor Function (36 items) Self-Care (90 items) Wheelchair Mobility (56 items) Manual wheelchair (41 items) Power wheelchair (15 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
King's Sarcoidosis Questionnaire (KSQ)	PRO	Full	Adult	General Health status (GHS) (10 items) Lung (6 items) Medication (3 items) Skin (3 items) Eyes (7 items)	Sarcoidosis	735	Rare respiratory disease	ERN LUNG	Link
Spinal Cord Injury–Functional Index short forms (SCI-FI SFs)	PRO	Full	Adult	Ambulation (11 items) Basic Mobility (11 items) Fine Motor Function (10 items) Self-Care (11 items) Wheelchair Mobility Manual wheelchair (10 items) Power wheelchair (10 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Spinal Cord Injury - Functional Index/Assistive Technology (SCI-FI/AT)	PRO	Full	Adult	Ambulation (29 items) Basic Mobility (41 items) Fine Motor Function (35 items) Self-Care (71 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Spinal Cord Injury - Functional Index/Assistive Technology Short Forms (SCI-FI/AT SFs)	PRO	Full	Adult	Ambulation (6 items) Basic Mobility (9 items) Fine Motor Function (8 items) Self-Care (9 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Jarad and Sequeiros Symptom Score Questionnaire (Jarad Score)	PRO	Full	Adult	Cough, sputum breathlessness fatigue	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Narcolepsy Severity Scale (NSS)	PRO	Full	Adult	Factor I (4 items on sleep paralysis and hallucinations) Factor II (8 items on excessive daytime sleepiness and nighttime sleep) Factor III (3 items on cataplexy)	Narcolepsy	2073	Rare sleep disorder	Not applicable	Link
Fabry-specific Pediatric Health and Pain Questionnaire (FPHPQ)	PRO or ObsRO	Full	Pediatric Adolescent	Symptom-related (23 items) Pain associated with heat or exertion Pain associated with cold Abdominal pain and fatigue symptoms Outcome-Related (4 items)	Fabry disease	324	Rare inborn error of metabolism	MetabERN	Link
Work Productivity and Activity Impairment Questionnaire: Uveitis, Version 2.0 (WPAI:Uveitis v2.0)	PRO	Basic	Adult	Work productivity (6 items)	Uveitis	98715	Rare systemic or rheumatologic disease Rare ophthalmic disorder	ERN RITA ERN EYE	Link
Work Productivity and Activity Impairment Questionnaire: TTR Amyloidosis, Version 2.0 (WPAI:TTR Amyloidosis v2.0)	PRO	Basic	Adult	Work productivity	Hereditary ATTR amyloidosis	271861	Rare systemic or rheumatologic disease Rare cardiac disease	ERN GUARD-HEART	Link Link
Work Productivity and Activity Impairment Questionnaire: Mucopolysaccharidosis type VII, Version 2.0 (WPAI:MPS-VII-Caregiver v2.0)	PRO	Full	Caregiver	Work productivity	Mucopolysaccharidosis type 7	584	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Work Productivity and Activity Impairment Questionnaire: Duchenne Muscular Dystrophy, Caregiver Version 2.0 (WPAI:DMD-CG)	PRO	Full	Caregiver	Work productivity	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Esophagus and Stomach Surgery Symptom Scale (ES4)	PRO	Full	Adult	Cervico-thoracic symptoms (7 items) Abdominal hypersensitivity symptoms (6 items) Abdominal distension symptoms (4 items) Diet-induced systemic symptoms (6 items)	Carcinoma of esophagus	70482	Rare tumor	ERN EURACAN	Link
Esophago-Gastric surgery and Quality of Dietary life (EGQ-D)	PRO	Full	Adult	Eating behaviour (8 items)	Carcinoma of esophagus	70482	Rare tumor	ERN EURACAN	Link
MyeloProliferative Neoplasm Symptom Assessment Form (MPN-SAF)	PRO	Full	Pediatric Adolescent Adult	Early satiety Abdominal pain Abdominal discomfort Inactivity Headache Concentration problem Dizziness Numbness Insomnia Sad Mood Sexuality Problems Cough Night Sweats Itching Bone Pain Fever Weight Loss Quality of Life Fatigue	Myeloproliferative neoplasm	98274	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment Questionnaire: Hemophilia Specific (WPAI+CIQ:HS)	PRO	Basic	Adult	Work productivity (9 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Patient Reported Outcomes, Burdens and Experiences (PROBE)	PRO	Full	Pediatric Adolescent Adult	Section I: Demograpfique data (4 items) Section II: Patient‐reported outcomes—general health problems (11 items) Section III: Haemophilia-related health (9 items) Section IV: EQ-5D-5L and EQ-VAS, EuroQuality of life five dimension 5-level instrument (5 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Hemophilia Activities List (HAL)	PRO	Full	Adult	Lying down/ sitting/ kneeling / standing (8 items) Functions of the legs (9 items) Functions of the arms (4 items) Use of transportation (3 items) Self-care (5 items) Household tasks (6 items) Leisure activities (7 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Paediatric Haemophilia Activities List (PedHAL)	PRO or ObsRO	Full	Pediatric Adolescent	Sitting/ kneeling standing (10 items) Functions of the legs (11 items) Functions of the arm (6 items) Use of transportation (3 items) Self care (9 items) Household tasks (3 items) Leisure activities and sports (11 items) + Two unscored items on adaptation and using an aid	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF)	PRO	Full	Adult	Abdominal pain (1 item) Nausea (1 item) Spots (1 item) Itching (1 item) Flushing (1 item) Tiredness/Fatigue (1 item) Vomiting (2 items) Diarrhea (2 items)	Systemic mastocytosis	2467	Tumor of hematopoietic and lymphoid tissues	ERN PaedCan ERN EURACAN ERN EuroBloodNet	Link
Work Productivity and Activity Impairment Questionnaire: Spinal Muscular Atrophy, for Caregivers, Version 2 (WPAI:SMA-CG)	PRO	Basic	Caregiver	Work Productivity	Spinal Muscular Atrophy	70	Rare neuromuscular disease	ERN EURO-NMD	Link
Treatment Outcome Score (TOS)	PRO or ObsRO	Full	Adult	Symptom complex identification at baseline severity assessment of each symptom complex at baseline response assessment at 4 and 24 h post-dosing	Hereditary angioedema	91378	Rare systemic or rheumatologic disease	ERN RITA	Link
Mean Symptom Complex Severity score (MSCS)	PRO or ObsRO	Basic	Adult	Symptom complex identification (patients identify where on the body symptoms are occurring) Severity assesment of each symptom complex	Hereditary angioedema	91378	Rare systemic or rheumatologic disease	ERN RITA	Link
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Patient version (HS-FOCUS Patient version)	PRO	Full	Adolescent Adult	Walking/Standing (10 items) Reach/Grip (12 items) Sleeping (4 items) Schooling/Work (3 items) Activities (6 items) Breathing (6 items) Overall Function (6 items)	Mucopolysaccharidosis type 2	580	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Shortened version - Patient version (Shortened HS-FOCUS - Patient version)	PRO	Full	Adolescent Adult	Walking/Standing (lower body) (4 items) Grip/reach (upper body) (6 items) School/ work (2 items) Activities (3 items) Breathing (3 items)	Mucopolysaccharidosis type 2	580	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Patient Experiences and Satisfaction with Medications (PESaM)	PRO	Full	Adult	Idiopathic pulmonary fibrosis module (10 items) Atypical hemolytic uraemic syndrome module (12 items) Generic module (16 items) Patient expectation module (11 items)	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Cognitive Impact (ASCQ-Me® - Cognitive Impact)	PRO	Full	Adult	Cognitive Impact (15 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Emotional Impact (ASCQ-Me® - Emotional Impact)	PRO	Full	Adult	Emotional Impact (20 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Pain (ASCQ-Me® - Pain)	PRO	Full	Adult	Pain (13 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Sleep Impact (ASCQ-Me® - Sleep Impact)	PRO	Full	Adult	Sleep Impact (12 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Social Functioning Impact (ASCQ-Me® - Social Functioning Impact)	PRO	Full	Adult	Social functioning impact (17 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System® - Stiffness Impact (ASCQ-Me® - Stiffness Impact)	PRO	Full	Adult	Stiffness Impact (12 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Emotional Impact (ASCQ-Me SF® - Emotional Impact)	PRO	Full	Adult	Emotional Impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Pain Impact (ASCQ-Me SF® - Pain Impact)	PRO	Full	Adult	Pain impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Pain Episodes (ASCQ-Me SF® - Pain Episodes)	PRO	Full	Adult	Pain episodes (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Sleep Impact (ASCQ-Me SF® - Sleep Impact)	PRO	Full	Adult	Sleep Impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Social Functioning Impact (ASCQ-Me SF® - Social Functioning Impact)	PRO	Full	Adult	Social functioning impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Stiffness Impact (ASCQ-Me SF® - Stiffness Impact)	PRO	Full	Adult	Stiffness Impact (5 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Sickle Cell Disease Medical History Checklist (SCD-MHC)	PRO	Full	Adult	7 conditions usually secondary to SCD and 2 treatments indicative of severity	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Shortened version - Parent version (Shortened HS-FOCUS - Parent version)	PRO	Full	Adult	Walking/Standing (lower body) (5 items) Grip/reach (upper body) (8 items) School/ work (2 items) Activities (2 items) Breathing (4 items)	Mucopolysaccharidosis type 2	580	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Inhibitor-Specific Quality of Life with Aspects of Caregiver Burden (Adapted INHIB-QoL)	PRO	Full	Caregiver	Quality of life in haemophilia patients with inhibitors	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Plexiform neurofibromas Quality of Life measure (PlexiQoL)	PRO	Full	Adult	Quality of life (18 items)	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Spinal Cord Injury Computer Adaptive Test (SCI-CAT)	PRO	Full	Adult	Mobility (193 items) Self-care (109 items) Communication (19 items) + Items related to sexual function (5 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Profile of Mood States - Phenylketonuria (PKU-POMS)	PRO	Full	Adolescent Adult	Activity (3 items) Anxiety (4 items) Confusion (3 items) Tiredness (3 items) Anger (3 items) Depression (4 items)	Phenylketonuria	716	Rare inborn error of metabolism	MetabERN	Link
Neurological Fatigue Index - Motor Neurone Disease (NFI-MND)	PRO	Full	Pediatric Adolescent Adult	Energy (6 items) Weakness (7 items) Summary scale (8 items)	Motor neuron disease	98503	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item bank v1.0 – Upper Extremity Function – Fine Motor, ADL (Neuro-QoL Item Bank v1.0 – Upper Extremity Function – Fine Motor, ADL)	PRO or ObsRO	Full	Adult	Upper Extremity Function Fine Motor ADL	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Autoinflammatory diseases Activity Index Diary (AIDAI)	PRO or ObsRO	Full	Pediatric Adolescent Adult	disease activity (12 items)	Mevalonate kinase deficiency	309025	Rare systemic or rheumatologic disease Rare inborn error of metabolism	ERN RITA MetabERN	Link
Autoinflammatory diseases Activity Index Diary (AIDAI)	PRO or ObsRO	Full	Pediatric Adolescent Adult	disease activity (12 items)	Familial Mediterranean fever	342	Rare systemic or rheumatologic disease	ERN RITA ERN ERKNet	Link
Autoinflammatory diseases Activity Index Diary (AIDAI)	PRO or ObsRO	Full	Pediatric Adolescent Adult	disease activity (12 items)	Cryopyrin-associated periodic syndrome	208650	Rare systemic or rheumatologic disease	ERN RITA	Link
Autoinflammatory diseases Activity Index Diary (AIDAI)	PRO or ObsRO	Full	Pediatric Adolescent Adult	disease activity (12 items)	Hereditary periodic fever syndrome	324924	Rare systemic or rheumatologic disease	ERN RITA	Link
Brief Index of Lupus Damage (BILD)	PRO	Full	Adult	Ocular (2 items) Neuropsychiatric (4 items) Renal (1 items) Pulmonary (2 items) Cardiovascular (3 items) Peripheral Vascular (3 items) Gastrointestinal (2 items) Musculoskeletal (4 items) Skin (2 items) Premature gonad failure 10 (1 item) Diabetes (1 item) Malignancy (1 item)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Pain Assessed Acromegaly Symptom Questionnaire (PASQ)	PRO	Full	Adult	headache excessive sweating joint pain fatigue soft-tissue swelling numbness or tingling of limbs general physical condition	Acromegaly	963	Rare endocrine disease	Endo-ERN	Link
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Chorea (Neuro-QoL Bank v2.0 - HDQLIFE - Chorea)	PRO	Full	Adult	physical activity participation Quality of life	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Concern with Death and Dying (Neuro-QoL Bank v2.0 - HDQLIFE - Concern with Death and Dying)	PRO	Full	Adult	anxiety or worry related to thoughts about death and dying	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Speech Difficulties (Neuro-QoL Bank v2.0 - HDQLIFE - Speech Difficulties)	PRO	Full	Adult	Difficulties in oral expression Difficulties in language production Difficulties in articulation General well-being	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Swallowing Difficulties (Neuro-QoL Bank v2.0 - HDQLIFE - Swallowing Difficulties)	PRO	Full	Adult	Difficulties with swallowing or choking have on eating Overall well-being	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Item Bank v1.0 - Depression (Neuro-QoL Item Bank v1.0 - Depression)	PRO	Full	Adult	Depression	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 - Emotional and Behavioral Dyscontrol (Neuro-QoL Item Bank v1.0 - Emotional and Behavioral Dyscontrol)	PRO	Full	Adult	Emotional and Behavioral dyscontrol	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 - Lower Extremity Function - Mobility (Neuro-QoL Item Bank v1.0 - Lower Extremity Function - Mobility)	PRO	Full	Adult	Lower Extremity Function - Mobility	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Social Relationships - Interaction With Peers (Neuro-QoL Item Bank v1.0 - Pediatric Social Relationships - Interaction With Peers)	PRO	Basic	Pediatric Adolescent	Pediatric Social Relationships and interaction With Peers	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Stigma (Neuro-QoL Item Bank v1.0 - Pediatric Stigma)	PRO	Basic	Pediatric Adolescent	Stigma	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Positive Affect And Well-Being (Neuro-QoL Item Bank v1.0 - Positive Affect And Well-Being)	PRO	Basic	Adult	Positive Affect Well-Being	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Stigma (Neuro-QoL Item Bank v1.0 - Stigma)	PRO	Basic	Adult	Stigma	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item Bank v1.1 - Satisfaction With Social Roles and Activities (Neuro-QoL Item Bank v1.1 - Satisfaction With Social Roles and Activities)	PRO	Basic	Adult	Satisfaction With Social Roles and Activities	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item Bank v2.0 - Cognitive Function (Neuro-QoL Item Bank v2.0 - Cognitive Function)	PRO	Basic	Adult	Cognitive function	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Item Bank v2.0 - Cognitive Function (Neuro-QoL Item Bank v2.0 - Cognitive Function)	PRO	Basic	Adult	Cognitive function	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Item Bank v2.0 - Pediatric Cognitive Function (Neuro-QoL Item Bank v2.0 - Pediatric Cognitive Function)	PRO	Basic	Pediatric Adolescent	Cognitive function	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v2.1 - Pediatric Fatigue (Neuro-QoL Item Bank v2.1 - Pediatric Fatigue)	PRO	Basic	Pediatric Adolescent	Fatigue	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Scale v1.0 - Communication (Neuro-QoL Scale v1.0 - Communication)	PRO	Basic	Adult	Communication	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Scale v2.0 - HDQLIFE - End of Life Planning (Neuro-QoL Scale v2.0 - HDQLIFE - End of Life Planning)	PRO	Full	Adult	End of Life Planning	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Bank v1.0 - Ability To Participate In Social Roles and Activities (Neuro-QoL Bank v1.0 - Ability To Participate In Social Roles and Activities)	PRO	Full	Adult	Ability To Participate In Social Roles and Activities	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Bank v1.0 - Anxiety (Neuro-QoL Bank v1.0 - Anxiety)	PRO	Basic	Adult	Anxiety	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Ability to Participate in Social Roles and Activities (Neuro-QoL Short Form v1.0 - Ability to Participate in Social Roles and Activities)	PRO	Full	Adult	Ability to Participate in Social Roles and Activities	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Anxiety (Neuro-QoL Short Form v1.0 - Anxiety)	PRO	Basic	Adult	Anxiety	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Depression (Neuro-QoL Short Form v1.0 - Depression)	PRO	Basic	Adult	Depression	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Emotional and Behavioral Dyscontrol (Neuro-QoL Short Form v1.0 - Emotional and Behavioral Dyscontrol)	PRO	Full	Adult	Emotional and Behavioral dyscontrol	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Fatigue (Neuro-QoL Short Form v1.0 - Fatigue)	PRO	Full	Adult	Fatigue	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Lower Extremity Function - Mobility (Neuro-QoL Short Form v1.0 - Lower Extremity Function - Mobility)	PRO	Full	Adult	Lower Extremity Function - Mobility	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Anxiety (Neuro-QoL Item Bank v1.0 - Pediatric Anxiety)	PRO	Basic	Pediatric Adolescent	Anxiety	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Anxiety (Neuro-QoL Short Form v1.0 - Pediatric Anxiety)	PRO	Basic	Pediatric Adolescent	Anxiety	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.1 – Pediatric Depression (Neuro-QoL Item Bank v1.1 - Pediatric Depression)	PRO	Basic	Pediatric Adolescent	Depression	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.1 - Pediatric Depression (Neuro-QoL Short Form v1.1 - Pediatric Depression)	PRO	Full	Pediatric Adolescent	Depression	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Anger (Neuro-QoL Short Form v1.0 - Pediatric Anger)	PRO	Basic	Pediatric Adolescent	Anger	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v2.1 - Pediatric Fatigue (Neuro-QoL Short Form v2.1 - Pediatric Fatigue)	PRO	Basic	Pediatric Adolescent	Fatigue	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v2.0 - Pediatric Cognitive Function (Neuro-QoL Short Form v2.0 - Pediatric Cognitive Function)	PRO	Full	Pediatric Adolescent	Cognitive function	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.1 - Satisfaction with Social Roles and Activities (Neuro-QoL Short Form v1.1 - Satisfaction with Social Roles and Activities)	PRO	Full	Adult	Satisfaction with Social Roles and Activities	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function)	PRO	Full	Adult	Cognitive function	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function)	PRO	Full	Adult	Cognitive function	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Pain (Neuro-QoL Short Form v1.0 - Pediatric Pain)	PRO	Basic	Pediatric Adolescent	Pain	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Social Relationships - Interaction with Peers (Neuro-QoL Short Form v1.0 - Pediatric Social Relationships - Interaction with Peers)	PRO	Basic	Pediatric Adolescent	Pediatric Social Relationships and interaction with Peers	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Stigma (Neuro-QoL Short Form v1.0 - Pediatric Stigma)	PRO	Basic	Pediatric Adolescent	Stigma	Duchenne muscular dystrophy	98896	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Positive Affect and Well-Being (Neuro-QoL Short Form v1.0 - Positive Affect and Well-Being)	PRO	Basic	Adult	Positive Affect and Well-Being	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Stigma (Neuro-QoL Short Form v1.0 - Stigma)	PRO	Basic	Adult	Stigma	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Sleep Disturbance (Neuro-QoL Short Form v1.0 - Sleep Disturbance)	PRO	Basic	Adult	Sleep Disturbance	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v1.0 - Upper Extremity Function - Fine Motor, Activity of Daily Living (Neuro-QoL Short Form v1.0 - Upper Extremity Function - Fine Motor, ADL)	PRO	Full	Adult	Upper Extremity Function-Fine Motor Upper Extremity Function-ADL	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease Rare epilepsy	ERN EURO-NMD ERN EpiCARE	Link
Quality of Life in Neurological Disorders Short Form v2.0 - HDQLIFE - Chorea 6a (Neuro-QoL Short Form v2.0 - HDQLIFE - Chorea 6a)	PRO	Full	Adult	Quality of life (6 items)	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Short Form v2.0 - HDQLIFE - Concern with Death and Dying 6a (Neuro-QoL Short Form v2.0 - HDQLIFE - Concern with Death and Dying 6a)	PRO	Full	Adult	Concern with Death and Dying	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Short Form v2.0 - HDQLIFE - Speech Difficulties 6a (Neuro-QoL Short Form v2.0 - HDQLIFE - Speech Difficulties 6a)	PRO	Full	Adult	Speech Difficulties	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Quality of Life in Neurological Disorders Short Form v2.0 - HDQLIFE - Swallowing Difficulties 6a (Neuro-QoL Short Form v2.0 - HDQLIFE - Swallowing Difficulties 6a)	PRO	Full	Adult	Swallowing Difficulties	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
Haemophilia Quality of Life Questionnaire Index (Haemo-QoL Index)	PRO or ObsRO	Full	Pediatric Adolescent	Quality of life (8 items)	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Childhood Arthritis Health Profile (CAHP)	PRO or ObsRO	Full	Pediatric Adolescent	Gross motor function Fine motor function Role activities	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Children's Arthritis Self-Efficacy (CASE)	PRO	Full	Pediatric Adolescent	Activity (4 items) Symptoms (4 items) Emotions (3 items)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Duruöz Hand Index (DHI)	PRO or ObsRO	Full	Adult	Kitchen (8 items) Dressing (2 items) Hygiene (2 items) In the Office (2 items) Other (4 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Atrial Fibrillation Severity Scale (AFSS)	PRO	Full	Adult Aged	Frequency of episode duration of episode severity of episode	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Hemophilia Patient Satisfaction Scale (Hemo-Sat)	PRO	Full	Adult	Ease and convenience Efficacy Burden Specialist/nurses, Centre/Hospital General satisfaction with your treatment	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Patient Perspective of Arrhythmia Questionnaire (PPAQ)	PRO	Full	Adolescent Adult	Frequency and duration of SVT episodes (2 items) Presence and bothersomeness of symptoms (19 items) Impact on life (10 items) Restricted activity days (2 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
HDQLIFE Scale v2.0 - Meaning and Purpose (HDQLIFE Scale v2.0 - Meaning and Purpose)	PRO	Full	Adult	Meaning and Purpose	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
EORTC QLQ - Non Hodgkin Lymphoma High Grade Module (EORTC QLQ-NHL-HG29)	PRO	Full	Adult	Symptom burden due to disease and/or treatment (7 items) Neuropathy (2 items) Physical condition/Fatigue (5 items) Emotional impacts (4 items) Worries/Fears health and functioning (11 items)	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
ABILHAND (ABILHAND)	PRO	Full	Adult Aged	Hand and upper limb (dis)ability	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Validated Hemophilia Regimen Treatment Adherence Scale – On-Demand (VERITAS-PRN)	PRO	Full	Adult	Treating Timing Dosing Planning Remembering Communicating	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Amyotrophic Lateral Sclerosis Specific Quality of Life (ALSSQOL)	PRO	Full	Adult	Negative emotion (13 items) Interaction with people and the environment (11 items) Intimacy (7 items) Religiosity (4 items) Physical symptoms (6 items) Bulbar function (5 items)	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Amyotrophic Lateral Sclerosis Specific Quality of Life-Revised (ALSSQOL-R)	PRO	Full	Adult	Negative emotion (13 items) Interaction with people and the environment (11 items) Intimacy (7 items) Religiosity (4 items) Physical symptoms (6 items) Bulbar function (5 items)	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Lupus Damage Index Questionnaire (LDIQ)	PRO	Full	Adult	Eyes Brain and Nerves Kidneys Lungs Heart Blood vessels Stomach and bowels Muscles and Bones Skin Menopause Diabetes Cancer	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Child's Version-Pediatric Rheumatology Quality of Life Scale (Child's Version-PRQL)	PRO	Full	Pediatric	Physical health (5 items) Psychosocial health (5 items)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Raynaud’s Condition Score (RCS)	PRO	Full	Adult	Signs and symptoms (1 item)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Rheumatology Attitudes Index (RAI)	PRO	Full	Adult	psychological construct of learned helplessness (15 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Scleroderma Assessment Questionnaire (SAQ)	PRO	Full	Adult	Index of vascular status (4 items) Index of respiratory status (6 items) Index of Gastrointestinal status (5 items) Index of musculoskeletal status (8 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Scleroderma Functional Score (FS)	PRO or ObsRO	Basic	Adult	functional ability (11 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Myeloma Patient Outcome Scale (MyPOS)	PRO	Full	Adult	Symptoms & function Emotional response Healthcare support	Multiple Myeloma	29073	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
Sarcoidosis Assessment Tool (SAT)	PRO	Full	Adult	Physical Functioning Satisfaction with Roles and Activities Pain Interference Sleep Disturbance Fatigue Sarcoidosis–Lung Concerns Sarcoidosis–Skin Concerns Sarcoidosis–Skin Stigma	Sarcoidosis	797	Rare respiratory disease	ERN LUNG	Link
St George’s Respiratory Questionnaire for Idiopathic Pulmonary Fibrosis (SGRQ-I)	PRO	Full	Adult	Symptoms Activity Impacts on daily life	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Systemic Lupus Erythematosus Questionnaire on Family Role Functioning (SLE-FAMILY)	PRO	Full	Adult	Fatigue (1 item) Activity participation (1 item) Mental health (1 item) Isolation (1 item) Love and intimacy (1 item) You/fulfilling family roles (FAMILY) (1 item)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Lupus Erythematosus Needs Questionnaire (SLENQ)	PRO	Full	Adult	Psychological/spiritual/existential Health services Health information Physical Social Daily living Employment/financial	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Disability and Impact Profile (DIP)	PRO	Full	Adult	Symptoms (3 items) Mobility (10 items) Self-care (6 items) Social activities (10 items) Communication (5 items) Psychological status (5 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Covid-19 Peritraumatic Distress Index- Cystic Fibrosis (CPDI-CF)	PRO	Full	Adult	anxiety depression specific phobias cognitive change avoidance and compulsive behaviour physical symptoms and loss of social functioning	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Arthritis Helplessness Index – 5 items (AHI-5 Helplessness)	PRO	Full	Adolescent Adult	Helplessness	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Ergonomic Assessment Tool for Arthritis (EATA)	PRO	Full	Adult	Self-assessment (40 items maximum) Consultation visit (59 items maximum)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Childhood Health Assessment Questionnaire - Child's Version (CHAQ-CV)	PRO	Full	Adolescent Adult	Dressing and Grooming Arising Eating Walking Hygiene Reach Grip Activities Discomfort	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Mouth Handicap in Systemic Sclerosis (MHISS)	PRO	Full	Adult	Mouth Handicap	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Parent's Arthritis Self-Efficacy Scale (PASE)	PRO	Full	Caregiver	parents' self-efficacy for managing children's arthritis-related symptoms psychosocial health	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Patient Reported Outcome Spine Trauma (AOSpine PROST)	PRO	Full	Adult	Quality of life (19 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Evaluating Respiratory Symptoms™: Idiopathic Pulmonary Fibrosis (E-RS™: IPF)	PRO	Full	Adult Aged	Chest Breathlessness Cough Sputum	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
A Tool to Assess Quality of Life in Idiopathic Pulmonary Fibrosis (ATAQ-IPF)	PRO	Basic	Adult Aged	Cough Dyspnea Forethought Sleep Mortality Exhaustion Emotional Well-being Spirituality Social Participation Finances Independence Sexual Health Relationships and Therapies	Idiopathic pulmonary fibrosis	2032	Rare respiratory disease	ERN LUNG	Link
Lupus Satisfaction Questionnaire (LSQ©)	PRO	Full	Adult	Satisfaction with current SLE treatments (25 items) Satisfaction with medical care (11 items) Satisfaction with insurance coverage (3 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Lupus Symptom Severity Diary (LSSD©)	PRO	Full	Adult	energy/vitality joint and muscle pain/stiffness/swelling flu-like symptoms cognition numbness/tingling skin symptoms and hair loss	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Systemic Lupus Erythematosus Impact Questionnaire (SIQ ©)	PRO	Full	Adult	Patients’ ability to make plans work physical functioning social functioning emotional functioning	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Amyotrophic Lateral Sclerosis Assessment Scales - 5 items (ALSAQ-5)	PRO	Basic	Adult Aged	Physical mobility ADL/independence Eating and drinking Communication Emotional reactions	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Plexiform Neurofibroma Pain Impact in Children & Adults	PRO	Basic	Pediatric Adolescent	Tumor-related pain intensity pain interference physical functioning	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Self International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (Self ISTH BAT)	PRO	Full	Adolescent Adult Aged	Bleeding	Von Willebrand disease	903	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Pediatric Bleeding Questionnaire (PBQ)	PRO	Full	Pediatric Adolescent	Bleeding	Von Willebrand disease	903	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Self-Administered Pediatric Bleeding Questionnaire (SPBQ)	PRO	Basic	Pediatric Adolescent	Bleeding	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Self-Administered Pediatric Bleeding Questionnaire (Self-PBQ)	PRO or ObsRO	Full	Pediatric Adolescent	Bleeding	Von Willebrand disease	903	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
School Age Self-Pediatric Bleeding Questionnaire (School Age Self-PBQ)	PRO	Full	Pediatric	Bleeding	Von Willebrand disease	903	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Cystic Fibrosis Abdomen-score (CFAbd-Score)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Thickened bowel wall Enlarged mesenteric lymph nodes Intussusception Appendiceal thickening Free fluid in the abdominal cavity Pancreatic cystosis Pancreatic lipomatosis Cholelithiasis Micro-gallbladder Coarse/Irregular hepatic parenchyma Nodular liver edge Periportal fibrosis Liver steatosis Decreased velocity of the portal vein (PV) Increased transient elastography (TE) Hepatomegaly Splenomegaly	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Visual Function and Corneal Health Status (V-FUCHS)	PRO	Basic	Adult Aged	Visual acuity (7 items) Glare or diurnal variation (8 items)	Fuchs endothelial corneal dystrophy	98974	Rare ophthalmic disorder	ERN EYE	Link
Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q)	PRO or ObsRO	Full	Pediatric Adolescent	Visual functioning (i.e., near, far, color, and night vision, photosensitivity, functionality, and visual aids) Visual-related Quality of life (i.e., medication use, activities, feelings)	Uveitis	98715	Rare systemic or rheumatologic disease Rare ophthalmic disorder	ERN RITA ERN EYE	Link
Duchenne Muscular Dystrophy Quality of Life Measure (DMD-QoL)	PRO or ObsRO	Full	Pediatric	Physical Autonomy Social relationship Identity Feelings and emotions	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Therapy Administration Satisfaction Questionnaire (TASQ)	PRO	Full	Adult	patients’ perceptions and satisfaction with therapy subcutaneous or therapy intravenous (12 items)	Non-Hodgkin lymphoma	547	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Pediatric Narcolepsy Severity Scale (NSS-P)	PRO	Full	Pediatric Adolescent	Sleep paralysis and hallucination (4 items) Daytime Sleepiness (5 items) Cataplexy (3 items) Refreshing effect of a sleep attack and nighttime sleep (2 items)	Narcolepsy	2073	Rare sleep disorder	Not applicable	Link
Narcolepsy Severity Scale for Clinical Trials (NSS-CT)	PRO	Full	Adult	Factor I (4 items on sleep paralysis and hallucinations) Factor II (8 items on excessive daytime sleepiness and nighttime sleep) Factor III (3 items on cataplexy)	Narcolepsy	2073	Rare sleep disorder	Not applicable	Link
Satisfaction Questionnaire with Intravenous or Subcutaneous Hemophilia Injection (SQ-ISHI)	PRO	Full	Adolescent Adult Aged	Injection discomfort Vein access difficulty Injection difficulty Injection worry Time consuming Bother Preparation difficulty Travel impact Daily activities impact Free time activity impact Taking treatment as prescribed Confidence to prevent bleeds Satisfaction with spontaneity Satisfaction with treatment half‐life Overall satisfaction	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
THYroid CANcer-Quality of Life (THYCA-QoL)	PRO	Full	Adult	Neuromuscular (3 items) Voice (2 items) Concentration (2 items) Sympathetic (2 items) Throat/mouth problems (3 items) Psychological (4 items) Sensory (2 items)	Thyroid carcinoma	100088	Rare tumor Rare endocrine disease	ERN EURACAN ERN PaedCan Endo-ERN	Link
Fabry Disease PRO (FD-PRO)	PRO	Full	Adult	Neuropathy parcel (8 items) Impairment parcel (3 items) + 5 items on other fabry symptoms sweating (1 item) Difficulty in engaging in activities (1 item)	Fabry disease	324	Rare inborn error of metabolism	MetabERN	Link
Spinal Cord Injury Secondary Conditions Scale (SCI-SCS)	PRO	Full	Adult	Joint and muscle pain Sexual dysfunction Spasticity Circulatory problems Bladder dysfunction Bowel dysfunction Contractures Urinary tract infections Autonomic dysreflexia Diabetes Postural hypotension Injury caused by loss of sensation Respiratory problems Pressure sores Heterotopic ossification	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
German Spinal Cord Injury Survey (GerSCI)	PRO	Full	Adult	No ifnormation	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
International Spinal Cord Injury Survey (InSCI)	PRO	Full	Adult	No ifnormation	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
EORTC QLQ - Tyroid Cancer (EORTC QLQ-THY34)	PRO	Full	Adult	anxiety body image cramps discomfort in the head and neck dry mouth fatigue hair impact on job or education joint pain neuropathological problems restlessness shoulder functioning social support swallowing temperature tolerance voice and worries about important others	Thyroid carcinoma	100088	Rare tumor Rare endocrine disease	ERN EURACAN ERN PaedCan Endo-ERN	Link
Atrial Fibrillation-6 (AF6)	PRO	Full	Adult	Symptoms (6 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Goal Attainment Scaling for Haemophilia (GAS-Hēm)	PRO or ObsRO	Full	Pediatric Adolescent Adult	No ifnormation	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Satisfaction with oral anticoagulants in patients with non-valvular atrial fibrillation (SAFUCA)	PRO	Full	Adult	Effectiveness (3 items) Convenience (3 items) International Normalized Ratio (INR) Screening Interference (4 items) Health-Related Quality of Life (HRQuality of life) Interference (6 items) Side effects (3 items) Medical Care (3 items) General Satisfaction (3 items)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
Dyspnea-ALS-Scale (DALS-15)	PRO	Full	Adult	Dyspnea (15 items)	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Amyotrophic Lateral Sclerosis Specific Quality of Life-Short Form (ALSSQOL-SF)	PRO	Full	Adult	Negative emotion (3 items) Interaction with people and the environment (4 items) Intimacy (4 items) Religiosity (2 items) Physical symptoms (5 items) Bulbar function (2 items) + 1 additional Quality of life item	Amyotrophic lateral sclerosis	803	Rare neuromuscular disease	ERN EURO-NMD	Link
Cystic Fibrosis - Impact Questionnaire (CF-IQ)	PRO	Full	Adolescent Adult	Control and burden of CF treatment impacts (6 items) Physical activity impacts (7 items) Social activity impacts (4 items) Emotional impacts (5 items) Work/school limitation impacts (3 items)	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Systemic Lupus Erythematosus Steroid Questionnaire (SSQ)	PRO	Full	Adult	Steroid dose/duration (4 items) general impact (baseline burden 19 items) benefits (7 items) work/productivity (3 items) side effects (10 items) emotions (6 items) overall satisfaction (1 item)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Assessment of Life Habits - For children from birth to 4 years of age - 3.0 (LIFE-H - 0-4 - 3.0)	PRO or ObsRO	Full	Pediatric	Nutrition (7 items) Fitness (3 items) Personal Care (8 items) Communication (9 items) Housing (6 items) Mobility (3 items) Responsabilities (5 items) Interpersonal Relationships (5 items) Community Life (1 item) Education (4 items) Recreation (10 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For children from birth to 4 years of age - 3.0 (LIFE-H - 0-4 - 3.0)	PRO or ObsRO	Full	Pediatric	Nutrition (7 items) Fitness (3 items) Personal Care (8 items) Communication (9 items) Housing (6 items) Mobility (3 items) Responsabilities (5 items) Interpersonal Relationships (5 items) Community Life (1 item) Education (4 items) Recreation (10 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - For children 5 to 13 years, Long Form - 3.0 (LIFE-H - 5 to 13 - Long Form - 3.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (21 items) Fitness (8 items) Personal Care (35 items) Communication (21 items) Housing (28 items) Mobility (16 items) Responsabilities (15 items) Interpersonal Relationships (10 items) Community Life (2 items) Education (14 items) Employment (3 items) Recreation (24 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For children 5 to 13 years, Long Form - 3.0 (LIFE-H - 5 to 13 - Long Form - 3.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (21 items) Fitness (8 items) Personal Care (35 items) Communication (21 items) Housing (28 items) Mobility (16 items) Responsabilities (15 items) Interpersonal Relationships (10 items) Community Life (2 items) Education (14 items) Employment (3 items) Recreation (24 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - For children 5 to 13 years, Short Form - 3.0 (LIFE-H - 5 to 13 - Short Form - 3.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (4 items) Fitness (4 items) Personal Care (8 items) Communication (8 items) Housing (6 items) Mobility (4 items) Responsabilities (7 items) Interpersonal Relationships (6 items) Community Life (2 items) Education (6 items) Employment (1 items) Recreation (8 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For children 5 to 13 years, Short Form - 3.0 (LIFE-H - 5 to 13 - Short Form - 3.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (4 items) Fitness (4 items) Personal Care (8 items) Communication (8 items) Housing (6 items) Mobility (4 items) Responsabilities (7 items) Interpersonal Relationships (6 items) Community Life (2 items) Education (6 items) Employment (1 items) Recreation (8 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - General Long Form - 3.0 (LIFE-H General Long Form - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (17 items) Fitness (9 items) Personal Care (33 items) Communication (14 items) Housing (40 items) Mobility (18 items) Responsabilities (25 items) Interpersonal Relationships (14 items) Community Life (18 items) Education (13 items) Employment (12 items) Recreation (27 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - General Long Form - 3.0 (LIFE-H General Long Form - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (17 items) Fitness (9 items) Personal Care (33 items) Communication (14 items) Housing (40 items) Mobility (18 items) Responsabilities (25 items) Interpersonal Relationships (14 items) Community Life (18 items) Education (13 items) Employment (12 items) Recreation (27 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - General Short Form - 3.0 (LIFE-H General Short Form - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (4 items) Fitness (4 items) Personal Care (8 items) Communication (8 items) Housing (8 items) Mobility (5 items) Responsabilities (8 items) Interpersonal Relationships (7 items) Community Life (8 items) Education (2 items) Employment (8 items) Recreation (7 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - General Short Form - 3.0 (LIFE-H General Short Form - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (4 items) Fitness (4 items) Personal Care (8 items) Communication (8 items) Housing (8 items) Mobility (5 items) Responsabilities (8 items) Interpersonal Relationships (7 items) Community Life (8 items) Education (2 items) Employment (8 items) Recreation (7 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - General Short Version - 16 items - 3.0 (LIFE-H General Short Version - 16 items - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (1 item) Fitness (1 item) Personal Care (2 items) Communication (1 item) Housing (1 item) Mobility (2 items) Responsabilities (1 item) Interpersonal Relationships (1 item) Community Life (2 items) Education (1 item) Employment (2 items) Recreation (1 item)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - General Short Version - 16 items - 3.0 (LIFE-H General Short Version - 16 items - 3.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (1 item) Fitness (1 item) Personal Care (2 items) Communication (1 item) Housing (1 item) Mobility (2 items) Responsabilities (1 item) Interpersonal Relationships (1 item) Community Life (2 items) Education (1 item) Employment (2 items) Recreation (1 item)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - For children from birth to 4 years of age - 4.0 (LIFE-H - 0-4 - 4.0)	PRO or ObsRO	Full	Pediatric	Nutrition (6 items) Fitness (6 items) Personal Care (9 items) Communication (9 items) Housing (5 items) Mobility (11 items) Responsabilities (6 items) Interpersonal Relationships (6 items) Community Life (1 item) Education (3 items) Recreation (9 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For children from birth to 4 years of age - 4.0 (LIFE-H - 0-4 - 4.0)	PRO or ObsRO	Full	Pediatric	Nutrition (6 items) Fitness (6 items) Personal Care (9 items) Communication (9 items) Housing (5 items) Mobility (11 items) Responsabilities (6 items) Interpersonal Relationships (6 items) Community Life (1 item) Education (3 items) Recreation (9 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - For children from 5 to 13 years - 4.0 (LIFE-H - 5-13 - 4.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (6 items) Fitness (5 items) Personal Care (10 items) Communication (10 items) Housing (6 items) Mobility (13 items) Responsabilities (8 items) Interpersonal Relationships (8 items) Community Life (4 items) Education (7 items) Employment (3 items) Recreation (10 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For children from 5 to 13 years - 4.0 (LIFE-H - 5-13 - 4.0)	PRO or ObsRO	Full	Pediatric Adolescent	Nutrition (6 items) Fitness (5 items) Personal Care (10 items) Communication (10 items) Housing (6 items) Mobility (13 items) Responsabilities (8 items) Interpersonal Relationships (8 items) Community Life (4 items) Education (7 items) Employment (3 items) Recreation (10 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Assessment of Life Habits - For Teenagers, Adults and Seniors - 4.0 (LIFE-H - For Teenagers, Adults and Seniors - 4.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (7 items) Fitness (5 items) Personal Care (8 items) Communication (9 items) Housing (8 items) Mobility (13 items) Responsabilities (9 items) Interpersonal Relationships (7 items) Community Life (8 items) Education (6 items) Employment (8 items) Recreation (8 items)	Myelodysplastic syndrome	52688	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Assessment of Life Habits - For Teenagers, Adults and Seniors - 4.0 (LIFE-H - For Teenagers, Adults and Seniors - 4.0)	PRO or ObsRO	Full	Adolescent Adult Aged	Nutrition (7 items) Fitness (5 items) Personal Care (8 items) Communication (9 items) Housing (8 items) Mobility (13 items) Responsabilities (9 items) Interpersonal Relationships (7 items) Community Life (8 items) Education (6 items) Employment (8 items) Recreation (8 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Pediatric Quality of Life Inventory™ Spinal Cord Injury Module (PedsQL™ Spinal Cord Injury Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	daily activities mobility bladder function bowel function pressure injury pain interference social participation worry bladder bowel worry social	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Disease Specific Module for Cystic Fibrosis (CFM) - Self-reported version (DISABKIDS CFM - SR version)	PRO	Full	Pediatric Adolescent	Impact (4 items) Treatment (6 items) + 3 items on symptoms	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER ERN TRANSPLANT-CHILD	Link
Myasthenia Gravis Quality of Life 15-item Scale - Revised (MG-QoL15r)	PRO	Full	Adult	Quality of life (15 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Cleveland Global Quality of Life score (CGQL)	PRO	Full	Adult	Current quality of life current quality of health current energy level	Familial adenomatous polyposis	733	Rare gastroenterologic disease	ERNICA ERN GENTURIS	Link
Hematology Patient Reported Symptom Screen (HPRSS)	PRO	Full	Adult Aged	Fatigue Pain Quality of life	Amyloidosis	69	Rare systemic or rheumatologic disease	ERN EuroBloodNet ERN RITA ERKNet ERN GUARD-HEART ERN EURO-NMD	Link
Cancer Treatment Survey (CaTS)	PRO	Full	Adult	Sensory/psychological concerns (14 items) Procedural concerns (11 items)	Lymphoma	223735	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN PaedCan ERN EURACAN	Link
Understanding the impact of achondroplasia on quality of life (ACHQoL)	PRO or ObsRO	Full	Pediatric Adolescent	No information	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Achondroplasia Parent Experience Measure (APEM)	PRO	Full	Caregiver	Caretaking responsibilities (6 items) Emotional well-being (6 items) Family (2 items) Work (1 item)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
RICE Bladder Symptom Impact Scale - 6 items (RICE BSI-6)	PRO	Full	Adult	Interest in Life Feelings of Self-Worth Social Life Ability to Carry out Your Home Responsibilities Energy Level Moods	Interstitial cystitis	37202	Rare urogenital disease	ERN eUROGEN	Link
Alfred Wellness Score (AWESCORE)	PRO	Full	Adult	Respiratory physical nutritional psychological general health	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER	Link
Multiple Myeloma Symptom and Impact Questionnaire (MySIm-Q)	PRO	Basic	Adult Aged	Multiple Myeloma Symptoms (17 symptoms) Impacts (9 impacts)	Multiple Myeloma	29073	Tumor of hematopoietic and lymphoid tissues	ERN EuroBloodNet ERN EURACAN	Link
Patient Uncertainty Questionnaire-Rheumatology (PUQ-R)	PRO	Full	Adult Aged	symptoms and flares (14 items) medication (11 items) trust in doctor (8 items) self-management (6 items) impact (10 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Spinal Cord Injury Functional Ambulation Profile (SCI-FAP)	PRO	Full	Adult	walking and carrying a bag the Timed “Up & Go” Test walking while negotiating carpet, obstacles, stairs, a curb and a door	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Atrial Fibrillation Symptoms Questionnaire™ (AFSymp™)	PRO	Full	Adult	Heart symptoms (4 items) Tiredness (3 items) Chest discomfort (2 items) Dizziness (1 item) Shortness of breath (1 item)	Familial atrial fibrillation	334	Rare cardiac rythm disease	ERN GUARD-HEART	Link
DUX Questionnaire for lower extremity bone tumor (Bt-DUX)	PRO	Full	Adolescent Adult	Cosmetic (5 items) Social (5 items) Emotional (5 items) Physical function (5 items)	Extraskeletal Ewing sarcoma	370334	Rare tumor	ERN PaedCan ERN EURACAN	Link
Spinal Cord Injury Exercise Self-Efficacy Scale (ESES)	PRO	Full	Adolescent	Exercise Self-Efficacy (10 items)	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Glasgow Hearing Aid Benefit Profile (GHABP)	PRO	Full	Adult	Initial disability (8 items) Handicap (8 items) Hearing aid use (8 items) Hearing aid benefit (8 items) Residual disability (8 items) Satisfaction (8 items)	Not applicable	Not applicable	Rare deafness	ERN CRANIO	Link
Conners 3 Self Report Full Length (Conners 3-SR)	PRO	Full	Adolescent	Conners 3 Content Scales-Inattention Conners 3 Content Scales-Hyperactivity/Impulsivity Conners 3 Content Scales-Learning Problems Conners 3 Content Scales-Defiance/Aggression and Family Relations DSM-5 Symptoms Scales-ADHD inattentive DSM-5 Symptoms Scales-ADHD hyperactive-Impulsive DSM-5 Symptoms Scales-ADHD Combined DSM-5 Symptoms Scales-Conduct Disorder DSM-5 Symptoms Scales-Oppositional Defiant Disorder Validity Scale-Positive and Negative Impression Validity Scale-Inconsistency Index Anxiety and Depression Schoolwork/Grades Friendship/Relationship and Home Life Other Concerns and Strenghts/Skills	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Inventory® (QOLI®)	PRO	Full	Adolescent Adult	Health (2 items) Self-esteem (2 items) Goals and values (2 items) Money (2 items) Work (2 items) Play (2 items) Learning (2 items) Creativity (2 items) Helping (2 items) Love (2 items) Friends (2 items) Children (2 items) Relatives (2 items) Home (2 items) Neighborhood (2 items) Community (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Multiple Ability Self-Report Questionnaire (MASQ)	PRO	Full	Adult	Language (8 items) Visual-Perceptual Ability (6 items) Verbal Memory (8 items) Visual-Spatial Memory (8 items) Attention/Concentration (8 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Functional Reading Independence Index (FRI Index)	PRO	Full	Adult Aged	Functional reading independence (49 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
York Incontinence Perceptions Scale (YIPS)	PRO	Full	Adult	Factual knowledge about incontinence Beliefs about control over incontinence Coping Personnal efficacy Acceptance Perceived impact on the family	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Multidimensional Assessment of Thymic States (MATHYS)	PRO	Full	Adult	Emotional reactivity Cognition speed (thought processes) Psychomotor function Motivation Sensory perception	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Functional Assessment of Cancer Therapy - Cognitive function issues (FACT-Cog)	PRO	Full	Adult	Perceived cognitive impairments (20 items) Comments from others (4 items) Perceived cognitive abilities (9 items) Impact on quality of life (4 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Performance Scales for Multiple Sclerosis (PS-MS)	PRO	Full	Adult	Mobility Hand function Vision Fatigue Cognitive symptom Bladder / Bowel Sensory symptom Spasticity symptom	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Beck Depression Inventory® - Second Edition (BDI®-II)	PRO	Full	Adolescent Adult	Cognitive-affective Somatic	Not applicable	Not applicable	Not applicable	Not applicable	Link
Inventory of Depressive Symptomatology (IDS-SR and IDS-C)	PRO	Full	Adult	Vegetative symptoms Cognitive changes Mood disturbance Endogeneous symptoms Anxiety symptoms	Not applicable	Not applicable	Not applicable	Not applicable	Link
Iowa Fatigue Scale (IFS)	PRO	Full	Adult	Cognitive (4 items) Fatigue (2 items) Energy (3 items) Productivity (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Sexual Function Questionnaire (SFQ)	PRO	Full	Adult	Desire (6 items) Arousal sensation (4 items) Arousal lubrication (2 or 4 items) Orgasm (3 items) Enjoyment (6 items) Pain (3 items) Partner relationship (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Abbreviated Sexual Function Questionnaire (ASFQ)	PRO	Full	Adult	Desire (6 items) Arousal sensation (4 items) Arousal lubrication (2 items) Arousal cognitive (2 items) Orgasm (3 items) Pain (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Cognitive and Affective Mindfulness Scale - Revised 12-item version (CAMS-R 12-item version)	PRO	Full	Adolescent Adult	Attention (3 items) Present focus (3 items) Awareness (3 items) Acceptance (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Cognitive and Affective Mindfulness Scale - Revised 10-item version (CAMS-R 10-item version)	PRO	Full	Adolescent Adult	Attention (3 items) Present focus (1 item) Awareness (3 items) Acceptance (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Personal Experiences Questionnaire (PEQ)	PRO	Full	Adult	Feelings for partner Sexual responsivity Sexual frequency Libido Vaginal distress/dyspareunia Partner problems	Not applicable	Not applicable	Not applicable	Not applicable	Link
Health and Work Questionnaire (HWQ)	PRO	Full	Adult	Own assessment (5 items) Other's assessment (6 items) Concentration/focus (4 items) Supervisor relations (2 items) Impatience/irritability (3 items) Work satisfaction (4 items) Personal life satisfaction (3 items) related to stress (1 item) Job control (1 item) Failure to finish tasks (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Depression Anxiety Stress Scales Short Form (DASS-21)	PRO	Full	Adult	Depression (7 items) Anxiety (7 items) Stress (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Depression Anxiety Stress Scales (DASS)	PRO	Full	Adult	Depression-Dysphoria (2 items) Depression-Hopelessness (2 items) Depression-Devaluation of life (2 items) Depression-Self-deprecation (2 items) Depression-Lack of interest/involvement (2 items) Depression-Anhedonia (2 items) Depression-Inertia (2 items) Anxiety-Autonomic arousal (5 items) Anxiety-Skeletal musculature effects (2 items) Anxiety-Situational anxiety (3 items) Anxiety-Subjective experience of anxious affect (4 items) Stress-Difficulty relaxing (3 items) Stress-Nervous arousal (2 items) Stress-Easily upset/agitated (3 items) Stress-Irritable/over-reactive (3 items) Stress-Impatience (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Perceived Deficits Questionnaire - Depression (PDQ-D)	PRO	Full	Adult	Attention/concentration (5 items) Retrospective memory (5 items) Prospective memory (5 items) Planning/organization (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Perceived Deficits Questionnaire (PDQ)	PRO	Full	Adult	A ttention/Concentration (5 or 1 items) Planning/Organization (5 or 2 items) Retrospective Memory (5 or 1 items) Prospective Memory (5 or 1 items)	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Behavior Rating Inventory of Executive Function® - Self-Report Version (BRIEF®-SR)	PRO	Full	Adolescent	Inhibit Emotional Control Monitor Shift Working Memory Plan/Organize Organization of Materials Task Completion	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Rating Inventory of Executive Function® - Adult Version (BRIEF®-A)	PRO	Full	Adult	Inhibit Shift Emotional Control Self-Monitor Initiate Working Memory Plan/Organize Task Monitor Organization of Materials	Not applicable	Not applicable	Not applicable	Not applicable	Link
Functional Assessment of Multiple Sclerosis: Trial Outcome Index (FAMS-TOI)	PRO	Full	Adult	Mobility (7 items) Symptoms (7 items) Thinking/fatigue (9 items) Additional concerns (14 items)	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Fallowfield's Sexual Activity Questionnaire (FSAQ)	PRO	Full	Adult	Sexual relationship status (3 items) Reasons for sexual inactivity (8 reasons listed) Sexual functioning (10 item) Pleasure from sexual intercourse (6 items) Discomfort during intercourse (2 items) Habit (1 item) Tiredness (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Brief Index of Sexual Functioning for Women (BISF-W)	PRO	Full	Adult	Thoughts/Desire (2 items) Arousal (2 items) Frequency of sexual activity (1 item) Receptivity/Initiation (3 items) Pleasure/orgasm (2 items) Relationship satisfaction (3 items) Problems affecting sexual function (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Apathy Inventory (AI)	PRO	Full	Aged	Emotional Blunting Lack of Initiative Lack of Interest	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Medical Outcomes Study Sleep scale (MOS Sleep)	PRO	Full	Adult	Initiation (2 or items) Maintenance (2 or 1 items) Respiratory problems (2 or items) Quantity (1 item) Perceived adequacy (2 items) Somnolence (3 or 1 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Family Environment Scale (FES)	PRO	Full	Pediatric Adolescent Adult	Relationship (Cohesion, Expressiveness, Conflict) Personal growth (Independence, Achievement orientation, Intellectual-cultural orientation, Active-recreational orientation, Moral-religious emphasis) System maintenance (Organization, Control)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pain Response to Activity and Positioning (PRAP)	PRO	Full	Adult	Sitting, bending, driving, lying, coughing (7 items) Standing, walking, standing up (5 items) Handling heavy objects (3 items) Standing, walking, bending, lying on stomach, standing up, handling heavy objects (10 items) Sitting, driving, lying on back or side, coughing (5 items) Dealing with the location of leg pain (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Spinal Pain Independence Measure (SPIM)	PRO	Full	Adult	Mobility (5 items) Activity in sitting and standing positions (3 items) Activity indoors (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Arizona Sexual Experience Scale (ASEX)	PRO	Full	Adult	sexual drive (1 item) arousal (1 item) penile erectio or vaginal lubrificationn (1 item) ability to reach orgasm (1 item) satisfaction from orgasm	Not applicable	Not applicable	Not applicable	Not applicable	Link
Daily Activities of Infants Scale (DAIS)	PRO	Full	Pediatric	Feeding Bathing Dressing Carrying Quiet play Active play Outings Sleeping	Not applicable	Not applicable	Not applicable	Not applicable	Link
Instrumental Activities of Daily Living (IADL)	ObsRO	Full	Aged	Using the telephone Shopping Food preparation Housekeeping Laundry Mode of transportation Responsibility for own medications Ability to handle finances	Not applicable	Not applicable	Not applicable	Not applicable	Link
Walking Impairment Questionnaire (WIQ)	PRO	Full	Adult	Symptoms (7 items) Walking distance (7 items) Walking speed (4 items) Stair climbing (3 items)	Not applicable	Not applicable	Rare vascular disease	VASCERN	Link
Pulmonary Functional Status & Dyspnea Questionnaire-Modified (PFSDQ-M)	PRO	Full	Adult Aged	Activity domain (10 items) Dyspnea domain (15 items) Fatigue domain (15 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Profile of Mood States - Short Form (POMS-SF)	PRO	Full	Adult	Tension-Anxiety (6 items) Depression-Dejection (8 items) Anger-Hostility (7 items) Vigor-Activity (6 items) Fatigue-Inertia (5 items) Confusion-Bewilderment (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Profile of Mood States (POMS)	PRO	Full	Adult	Tension-Anxiety (9 items) Depression-Dejection (15 items) Anger-Hostility (12 items) Vigor-Activity (8 items) Fatigue-Inertia (7 items) Confusion-Bewilderment (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
International Consultation on Incontinence Questionnaire-Female Lower Urinary Tract Symptoms - Long Form (ICIQ-FLUTS LF)	PRO	Full	Adult	Frequency Nocturia Urgency Urge urinary incontinence Bladder pain Frequency of urinary incontinence Stress urinary incontinence Unexplained urinary incontinence Amount of urinary leakage Hesitancy Straining to start urination Intermittency Nocturnal enuresis Strength of stream Urinary retention Dysuria Incomplete emptying Ability to stop urine flow	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
International Consultation on Incontinence Questionnaire Paediatric Lower Urinary Tract Symptoms (ICIQ-CLUTS)	PRO or ObsRO	Full	Pediatric Adolescent	Age and gender (2 items) Low urinary tract symptoms (9 items) Defecation frequency (1 item)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Weekly Record of Behavior (WRB)	PRO and ObsRO	Full	Caregivers Aged	Eating (2 behaviors) Bathing (1 behavior) Dressing (3 behaviors) Toileting (3 behaviors) Restless (2 behaviors) Mood & Anxiety (7 behaviors) Nap (1 behavior) Disruptive (9 behaviors) Memory (6 behaviors) Sleep (3 behaviors) Reality problems (3 behaviors) Positive behavior (4 behaviors)	Not applicable	Not applicable	Rare dementia	ERN-RND	Link
Fatigue Symptom Inventory (FSI)	PRO	Full	Adult	Severity (4 items) Frequency (2 items) General level of activity Ability to bathe and dress Normal work activity Ability to concentrate Relations with others Enjoyment of life Mood Diurnal variation (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Dutch Eating Behavior Questionnaire (DEBQ)	PRO	Full	Adolescent Adult	Emotional eating-Diffuse emotions (4 items) Emotional eating-Clearly labelled emotions (9 items) Restrained eating (10 items) External eating (10 items)	Not applicable	Not applicable	Genetic obesity	Endo-ERN	Link
Dutch Eating Behavior Questionnaire - Child version (DEBQ-C)	PRO	Full	Pediatric	Emotional eating (7 items) Restrained eating (7 items) External eating (6 items)	Not applicable	Not applicable	Genetic obesity	Endo-ERN	Link
Primary Care Evaluation of Mental Disorders (Clinician-administered version) (PRIME-MD (Clinician-administered version))	PRO and ClinRO	Full	Adult	Somatoform disorders Eating disorder Depression Anxiety Alcohol usage Overall health	Not applicable	Not applicable	Not applicable	Not applicable	Link
Epworth Sleepiness Scale-Alternative Version (ESS-ALT)	PRO	Full	Adult	Activities during which a subject has a chance of falling asleep (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Incontinence Symptom Index-Pediatric (ISI-P)	PRO	Full	Pediatric	Impairment stress urinary incontinence urge urinary incontinence insensate urinary incontinence nocturnal urinary incontinence pad use	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Male Urogenital Distress Inventory (MUDI)	PRO	Full	Adult	Stress symptoms (6 items) Irritative symptoms (5 items) Obstructive symptoms (6 items) Pain (3 items) Situational urgency (3 items) Contact urgency (2 items) Emotional urgency (2 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Well-Being Questionnaire (W-BQ)	PRO	Full	Adolescent Adult	Depression (6 items) Anxiety (6 items) Energy (4 items) Positive or Negative Well-being (6 items)	Not applicable	Not applicable	Rare diabetes mellitus	Endo-ERN	Link
Urinary Symptom Profile (USP)	PRO	Full	Adult	Stress urinary incontinence (SUI) (3 items) Overactive bladder (OAB) (7 items) Low stream (LS) (3 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Parenting Stress Index, Fourth Edition (PSI™-4)	PRO	Full	Adult	Distractibility/Hyperactivity Adaptability Reinforces Parent Demandingness Mood Acceptability Competence Isolation Attachment Health Role Restriction Depression Spouse/Parenting Partner Relationship Life Stress	Not applicable	Not applicable	Not applicable	Not applicable	Link
Urogenital Distress Inventory - Short Form (UDI-6)	PRO	Full	Adult	Irritative Symptoms (2 items) Obstructive/ Discomfort symptoms (2 items) Stress Symptoms (2 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Social Responsiveness Scale (SRS)	PRO	Full	Adolescent	Recognition of social cues (9 items) Interpretation of social cues (9 items) Responses to social cues (8 items) Tendency to engage socially (9 items) Language deficits (6 items) Restricted, repetitive and stereotyped patterns of behavior, interest and activities Miscellaneous symptoms (4 items)	Not applicable	Not applicable	Rare pervasive developmental disorder Rare intellectual disability	Not applicable	Link
Behavior and Symptom Identification Scale® (BASIS-32®)	PRO	Full	Adolescent Adult	Relation to Self Others (7) Daily living / Role functioning (6 items + working, school, household responsabilities) Depression / Anxiety (6 items) Impulsive / Addictive (6 items) Psychosis (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Bowel Control Scale (BWCS)	PRO	Full	Adult	Bowel control	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
International Consultation on Incontinence Questionnaire Anal Incontinence Symptoms and Quality of Life Module (ICIQ-B)	PRO	Full	Adult	Bowel pattern Bowel control Quality of life	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Illness Perception Questionnaire (IPQ)	PRO	Full	Adolescent Adult	Identity scale (12 core symptoms) Time-line (3 items) Consequences (7 items) Cure control (6 items) Cause (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Revised Illness Perception Questionnaire (IPQ-R)	PRO	Full	Adolescent Adult	Identity (14 items) Timeline (acute/chronic) (6 items) Timeline (cyclical) (4 items) Consequences (6 items) Personal control (6 items) Treatment control (5 items) Emotional representations (6 items) Illness coherence (5 items) Causes: Psychological attributions (6 items) Risk factors (7 items) Immunity (3 items) Accident or chance (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Psychological General Well-Being Index (PGWBI)	PRO	Full	Adult	Anxiety (5 items) Depressed mood (3 items) Positive well being (4 items) Self control (3 items) General health (3 items) Vitality (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Psychosocial Impact of Assistive Device Scale (PIADS)	PRO	Full	Adult	Willingness to take chances Ability to participate Eagerness to try new things Ability to adapt to ADL Ability to take advantage of opportunities Well being Competence Adequacy Efficiency Productivity Usefulness Expertise Capability Performance Skillfulness Independence Quality of Life Confusion Self-esteem Security Sense of power Embarrassment Happiness Sense of control Frustration Self-confidence	Not applicable	Not applicable	Not applicable	Not applicable	Link
Low Luminance Questionnaire (LLQ)	PRO	Full	Adult Aged	Driving (5 items) Extreme lighting (8 items) Mobility (6 items) Emotional distress (4 items) General dim lighting (6 items) Peripheral vision (3 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Sexual Function Index (SFI)	PRO	Basic	Adult	Ejaculation (2 items) Erectile Function (3 items) Overall satisfaction (1 item) Problem assessment (3 items) Sexual drive (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Health Assessment Questionnaire for the Spondyloarthropaties (HAQ-S)	PRO	Full	Adult	Disability Index section (20 items) Use of aids and devices (3 items) Activities (1 item) Pain scale (1 item) Global Health Status (1 item) Activity (3 items) Driving (2 items) Stiffness scale (1 item)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Jenkins Activity Survey (JAS)	PRO	Full	Adult	Speed and Impatience scale (Factor S) (21 items) Job Involvement scale (24 items) Hard-Driving and Competitive scale (20 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Index of Sexual Life (ISL)	PRO	Full	Adult	Sexual life satisfaction (6 items) Sexual drive (2 items) General life satisfaction (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Medical Outcomes Study (MOS) Social Support Survey (MOS-SSS)	PRO	Full	Adult	Emotional / informational support (8 items) Tangible support (4 items) Positive interaction (3 items) Affection (3 items) Additional item (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Life Functioning Questionnaire (LFQ)	PRO	Full	Adult	Part I: Role function (14 items) Leisure time with friends (3 items) Leisure time with family (3 items) Duties at home (4 items) Duties at work (4 items) Part II: Work role (7 items) (Not scored)	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Pictured Child's Quality of Life Self Questionnaire (AUQUEI)	PRO	Full	Pediatric	Leisure (6 items) Family environment (6 items) Duties (3 or 7 items) External world/autonomy (6 items) Separation (6 items) Parents (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Radiation Therapy Instrument (QOL-RTI)	PRO	Full	Adult	Functional / Health (9 items) Socioeconomic / Family (6 items) Emotional / Psychological (7 items) General / Overall Quality of life (2 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Family System Test (FAST)	PRO and ClinRO	Full	Pediatric Adolescent Adult	Family cohesion and hierarchy Family flexibility Generational boundaries	Not applicable	Not applicable	Not applicable	Not applicable	Link
Tableau d'Evaluation Assistée de la Qualité de Vie (TEAQV)	PRO and ClinRO	Full	Adult	Physical well-being Psychological well-being Family relationships Professional activity	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory? Family Impact Module (PedsQL? Family Impact Module)	PRO and ObsRO	Full	Caregiver	Physical Functioning (6 items) Emotional Functioning (5 items) Social Functioning (4 items) Cognitive Functioning (5 items) Communication (3 items) Worry (5 items) Daily Activities (3 items) Family Relationships (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Self-Esteem and Relationship Questionnaire (SEAR©)	PRO	Full	Adult	Sexual Relationship Satisfaction (8 items) Confidence-Self-Esteem (4 items) Confidence-Overall Relationship Satisfaction (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Functional Outcomes of Sleep Questionnaire Short Version (FOSQ-10)	PRO	Full	Adult	General Productivity (2 items) Activity level (6 items) Vigilance (1 item) Intimacy and Sexual Relationships (1 item)	Not applicable	Not applicable	Rare sleep disorder	Not applicable	Link
Duke Activity Status Index (DASI)	PRO	Full	Adult	Personal care (1 item) Ambulation (4 item) Household tasks (4 items) Sexual function (1 item) Recreation (2 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Health Related Productivity Questionnaire (HRPQ)	PRO	Full	Adolescent Adult	Current employment status (1 item) Employment related productivity (3 items) Household chores related productivity (3 items) Disease-related productivity (2 items) Schoolwork-related productivity (3 items) (Optional section) Work outside home (3 items) Housework (3 items) Classes/homework (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Physical Activity Scale for the Elderly (PASE)	PRO	Full	Adult Aged	Occupational household leisure time activities	Not applicable	Not applicable	Not applicable	Not applicable	Link
Mayers' Lifestyle Questionnaires (1), (2) and (3) (Mayers' LSQ (1), (2) and (3))	PRO	Full	Adolescent Adult Aged	Looking after yourself (26 or 15 items) Getting around: your own home (4 items) Getting around: further afield (5 items) Looking after others (2 items) Being with others (6 or 8 items) Your beliefs and values (3 items) Being in or out of work / attending college (5 or 6 items) Activities you enjoy doing (5 items) Finances (4 items) Choices (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Weekly Record of Behavior - short form (WRB-S)	PRO and ObsRO	Full	Caregivers Aged	Resistance to help with activities of daily living (5 behaviors) Restless behaviors (2 behaviors) Depressive behaviors (3 behaviors) Disruptive behaviors (4 behaviors) Memory-related behaviors (3 behaviors) Reality problems (2 behaviors)	Not applicable	Not applicable	Rare dementia	ERN-RND	Link
Health and Labour Questionnaire (HLQ)	PRO	Basic	Adult	Absence from work (3 items) Reduced productivity at paid work (9 items) Unpaid labour production (3 items) Impediments to paid and unpaid labour (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Endicott Work Productivity Scale (EWPS)	PRO	Full	Adult	work functioning	Not applicable	Not applicable	Not applicable	Not applicable	Link
iMTA Productivity Cost Questionnaire (iPCQ)	PRO	Full	Adult	Absenteeism (3 items) Presenteeism (3 items) Productivity losses of unpaid work (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Impact of Cancer Version 2 (IOC v2)	PRO	Full	Adolescent Adult	Positive impact summary scale (17 items) Altruism and empathy (4 items) Health awareness (4 items) Meaning of cancer (5 items) Positive self-evaluation (4 items) Negative impact summary scale (20 items) Appearance concerns (3 items) Body change concerns (3 items) Life interferences (7 items) Worry (7 items) Employment concerns (3 items) Relationships concerns (not partnered) (3 items) Relationships concerns (partnered) (4 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
Quality of Life with Eye Disease (CMV-EYE)	PRO	Full	Adult	Visual functions (7 items) Visual symptoms (5 items) Vision rating (2 items) Impact of treatment administration (4 items) Time spent receiving treatment every day	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
NIH Toolbox Sensation Battery (NIH Toolbox Sensation Battery)	PRO and PerfO	Basic	Adolescent Adult	Audition (1 task) Vision (1 task) Vestibular (1 task) Olfaction (1 task) Pain (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Nottingham Extended Activities of Daily Living (NEADL)	PRO	Full	Adult	Mobility (6 items) In the kitchen (5 items) Domestic tasks (5 items) Leisure activities (6 items)	Not applicable	Not applicable	Rare central nervous system and retinal vascular disease	VASCERN ERN-RND	Link
Near Activity Visual Questionnaire (NAVQ)	PRO	Full	Adult	Difficulty to perform tasks involving near vision (10 items) overall satisfaction with near visual ability (1 item)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
16-dimensional health-related quality of life measure (16D© )	PRO or ObsRO	Full	Adolescent	mobility vision hearing breathing sleeping eating speech elimination usual activities [school and hobbies] friends physical appearance mental function discomfort and symptoms depression distress and vitality	Not applicable	Not applicable	Not applicable	Not applicable	Link
Acceptance and Action Questionnaire-Stigma (AAQ-S)	PRO	Full	Adult	Psychological inflexibility (11 items) Psychological flexibility (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Ambivalence over Emotional Expression Questionnaire (AEQ)	PRO	Full	Adult	Ambivalence over Emotional Expression (28 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Adolescent Life Change Events Scale (ALCES)	PRO	Full	Adolescent	A parent died Brother or sister died Close friend died Parents divorced or separated Failed one or more subjects in school You were arrested by the police Flunked a grade in school Family member had trouble with alcohol Taking drugs or drinking alcohol Losing a favorite pet Parent or relative got very sick Losing a job Breaking up with a girl / boy friend Quitting school A close friend getting pregnant Parent losing a job Getting very sick or badly hurt Hassling with parents Trouble with teacher or principal Having problems with acne, weight, height Attending a new school Moving to a new home Change in physical appearance (braces, eyeglasses) 47 Hassling with a brother or sister Starting your menstrual period Having someone new move in with your family (grandparent, adopted brother or sister or other) Starting a job Mother getting pregnant Starting to date Making new friends Brother or sister getting married	Not applicable	Not applicable	Not applicable	Not applicable	Link
Attention Star (Attention Star)	PRO and ClinRO	Full	Pediatric Adolescent	School and learning Your routine Family Friends Being healthy How you feel How you behave Attention and organisation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Brief Fatigue Inventory (BFI)	PRO	Full	Adult	Fatigue (9 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Big Five 10 (BFI-10)	PRO	Basic	Adult	Extraversion (2 items) Agreeableness (2 items) Conscientiousness (2 items) Neuroticism (2 items) Openness (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Bond-Lader VAS (Mood Rating Scale) (BL-VAS)	PRO	Full	Adult	Alertness (9 items) Contentment (5 items) Anxiety (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Block Adult Physical Activity Screener - Year (Block PA_Adult04)	PRO	Basic	Adult	No information	Not applicable	Not applicable	Not applicable	Not applicable	Link
Block Kids 2-17 Screener (Block_K_Screen)	PRO	Basic	Adult	No information	Not applicable	Not applicable	Not applicable	Not applicable	Link
Block Kids Physical Activity Screener - Last Week (8-17)(Block_PA_KID04)	PRO	Basic	Adult	No information	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Rating Inventory of Executive Function®, Second Edition (BRIEF®2)	PRO or ObsRO	Full	Pediatric Adolescent	Inhibit Self-Monitor Shift Emotional Control Working Memory Plan/Organize	Not applicable	Not applicable	Not applicable	Not applicable	Link
Conners Comprehensive Behavior Rating Scales Self-Report Form (Conners CBRS Self-Report Form)	PRO	Full	Adolescent	Conners CBRS Content Scales DSM-5 Symptom Scales Other Clinical Indicators Conners Clinical Index Critical Items Validity Scales Impairment Items Additional Questions	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Child Occupational Self Assessment (COSA)	PRO	Full	Pediatric	Activity (Competence scale) how activities are important (Values scale)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Central Relationship Questionnaire (CRQ)	PRO	Basic	Adult	Wish response from others response of self	Not applicable	Not applicable	Not applicable	Not applicable	Link
Daily Hunger Questionnaire (DHQ)	PRO	Full	Adolescent Adult	Hunger (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Eysenck Personality Questionnaire (EPQ)	PRO	Basic	Adult	Extraversion- Introversion Neuroticism- Emotional Stability Psychoticism/Socialisation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Eysenck Personality Questionnaire Revised (EPQ-R)	PRO	Basic	Adult	Extraversion- Introversion Neuroticism- Emotional Stability Psychoticism/Socialisation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Eysenck Personality Questionnaire Revised Short Form (EPQR-S)	PRO	Basic	Adult	Extraversion- Introversion Neuroticism- Emotional Stability Psychoticism/Socialisation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Epworth Sleepiness Scale - Child Adolescent (ESS-CHAD)	PRO or ObsRO	Full	Pediatric Adolescent	Daytime sleepiness	Not applicable	Not applicable	Not applicable	Not applicable	Link
Groningen Activity Restriction Scale (GARS)	PRO	Full	Adult	Activities of the daily living Instrumental activities of the daily living	Not applicable	Not applicable	Not applicable	Not applicable	Link
World Health Organization Health and Work Performance Questionnaire (HPQ)	PRO	Basic	Adult	Health and Work Performance	Not applicable	Not applicable	Not applicable	Not applicable	Link
Inventory of Interpersonal Problems - 64 items (IIP - 64 items)	PRO	Basic	Adult	domineering/controlling vindictive/self-centered cold/distant socially inhibited non-assertive overly accommodating self-sacrificing and intrusive/needy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Inventory of Interpersonal Problems (IIP)	PRO	Basic	Adult	domineering/controlling vindictive/self-centered cold/distant socially inhibited non-assertive overly accommodating self-sacrificing intrusive/needy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Improved Health Assessment Questionnaire (Improved HAQ)	PRO	Full	Adult	Physial functioning	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Junior Temperament and Character Inventory (JTCI)	PRO	Full	Adolescent	Novelty Seeking (18 items) Harm Avoidance (22 items) Reward Dependence (9 items) Persistence (6 items) Self-directedness (20 items) Cooperativeness (20 items) Self-transcendence (10 items): Fantasy (5 items) Spirituality (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Karolinska Sleepiness Scale (KSS)	PRO	Full	Adult	Level of subjective sleepiness (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Lower Limb Functional Index (LLFI)	PRO	Full	Adult	Functioning (25 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Lower Limb Functional Index-10 (LLFI-10)	PRO	Full	Adult	Functioning (10 items) Patient Specific Index (1 item) Pre-injury duties (1 item) Overall status (1 item)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
MD Anderson Symptom Inventory (MDASI)	PRO	Full	Adult	Symptom severity (13 items) Symptom interference (6 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Milford Epworth Sleepiness Scale (MESS)	PRO	Full	Adult	Sleep	Not applicable	Not applicable	Not applicable	Not applicable	Link
modified Vision-Related Quality of Life Core Measure (mVCM1)	PRO	Full	Aged	Vision-Related Quality of Life (9 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Neuro-QoL Scale v1.1 - Pediatric Lower Extremity	PRO	Full	Adolescent	Lower extremity function (20 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Neuro-QoL Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL	PRO	Full	Adolescent	Upper extremity function (20 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
NIH Toolbox - Emotion - Social Relationships - Social Distress	PRO or ObsRO	Basic	Pediatric Adolescent Adult Aged	Emotion Social Relationships Social Distress	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Social Relationships - Social Support	PRO	Basic	Pediatric Adolescent Adult Aged	Emotion Social Relationships Social Support	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Friendship Computerized Adaptive Testing Age 18+ v2.0 (NIH Toolbox - Friendship CAT Age 18+ v2.0)	PRO	Full	Adult Aged	Friendship	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Friendship CAT Ages 8-17 v2.0 (NIH Toolbox - Friendship CAT Ages 8-17 v2.0)	PRO	Full	Adolescent	Friendship	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Loneliness FF Ages 8-17 v2.0	PRO	Full	Pediatric Adolescent	Loneliness	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - NIH Toolbox - Emotion - Social Relationships - Companionship	PRO or ObsRO	Basic	Pediatric Adolescent Adult Aged	Emotion Social Relationships Companionship	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Pediatric Global Health Child-Report Form (PROMIS - PGH-7)	PRO	Full	Pediatric Adolescent	General health: physical, mental, and social health (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Bank - Strength Impact (PROMIS-SI)	PRO	Full	Pediatric Adolescent	Physical capacity to perform functional activities of daily living (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Bank - Upper Extremity (PROMIS-UE)	PRO	Full	Pediatric Adolescent	Upper Extremity function (34 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Bank v1.0 - Physical Activity (PROMIS-PA)	PRO	Full	Pediatric Adolescent	Physical activity (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Bank v2.0 - Mobility (PROMIS-M)	PRO	Full	Pediatric Adolescent	Physical mobility (24 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v1.0 - Physical Activity 4a (PROMIS-PA 4a)	PRO	Full	Pediatric Adolescent	Physical activity (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v1.0 - Physical Activity 8a (PROMIS-PA 8a)	PRO	Full	Pediatric Adolescent	Physical activity (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v1.0 - Strength Impact 4a (PROMIS-SI 4a)	PRO	Full	Pediatric Adolescent	Physical capacity to perform functional activities of daily living (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v1.0 - Strength Impact 8a (PROMIS-SI 8a)	PRO	Full	Pediatric Adolescent	Physical capacity to perform functional activities of daily living (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v2.0 – Mobility 8a (PROMIS-M 8a)	PRO	Full	Pediatric Adolescent	Physical mobility (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS Pediatric Short Form v2.0 – Upper Extremity 8a (PROMIS-UE 8a)	PRO	Full	Pediatric Adolescent	Upper Extremity function (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Patient-Specific Functional Scale (PSFS)	PRO	Basic	Adult	Functioning (5 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Quality of Life Questionnaire™ (QLQ™)	PRO	Full	Adult	Physical Well-Being (12 items) Material Well-Being (12 items) Personal Growth (12 items) Marital Relations (12 items) Parent-Child Relations (12 items) Extended Family Relations (12 items) Extramarital Relations (12 items) Altruistic Behavior (12 items) Political Behavior (12 items) Job characteristics (12 items) Occupational Relations (12 items) Job Satisfiers (12 items) Creative / Aesthetic Behavior (12 items) Sports Activity (12 items) Vacation Behavior (12 items) Social Desirability (12 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quantity and Quality Method (QQ Method )	PRO	Full	Adult	Work functioning (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Split Week Self-Assessment of Sleep Survey (SASS-Y)	PRO	Full	Adult	Sleep (18 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Social Problems Questionnaire (SPQ)	PRO	Basic	Adult	Mobility (3 or 4 items) Joint stiffness (1 item) Family support (2 or 1 items) Worries about others (2 items) Worries about future (5 or 3 items) Maintaining purpose (2 items) Burden of illness (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Stanford Sleepiness Scale (SSS)	PRO	Full	Adult	Perceived level of sleepiness (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Time of Day Sleepiness Scale (ToDSS)	PRO	Basic	Adult	Sleepiness across the day (8 items)	Not applicable	Not applicable	Rare sleep disorder	Not applicable	Link
Upper Limb Functional Index (ULFI)	PRO	Full	Adult	Quality of life and upper extremity dysfunction (10 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Upper Limb Functional Index-10 (ULFI-10)	PRO	Full	Adult	Quality of life and upper extremity dysfunction (25 items)	Not applicable	Not applicable	Rare neuromuscular disease	ERN EURO-NMD	Link
Wechsler Memory Scale - Fourth Edition (WMS-IV)	PRO	Basic	Adolescent Adult Aged	Logical Memory Verbal Paired Associates Visual Reproduction Spatial Addition Symbol Span Design Memory General Cognitive	Not applicable	Not applicable	Not applicable	Not applicable	Link
Work Role Functioning Questionnaire 2.0 (WRFQ 2.0)	PRO	Full	Adult	Scheduling and output demands (10 items) physical demands (5 items) mental and social demands (7 items) flexibility demands (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Work Role Functioning Questionnaire-10 2.0 (WRFQ-10 2.0 )	PRO	Full	Adult	Work functioning (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Work Role Functioning Questionnaire-5 2.0 (WRFQ-5 2.0 )	PRO	Full	Adult	Work functioning (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Caregiver Quality of Life Index-Cancer (CQOLC)	PRO	Full	Caregiver	Burden (10 items) Distruptiveness (7 items) Positive adaptation (7 items) Financial concerns (3 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
Kidney Disease Quality of Life instrument (KDQOL™)	PRO	Full	Adult	Symptoms / Problems Effects of kidney disease on daily life Burden of kidney disease Cognitive function Work status Sexual function Quality of social interaction Sleep Social support Dialysis staff encouragement Patient satisfaction	Not applicable	Not applicable	Rare renal disease	ERN ERKNet	Link
Screen for Caregiver Burden (SCB)	PRO	Full	Caregiver	Subjective and Objective burden (25 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Modified Caregiver Appraisal Scale (MCAS)	PRO	Full	Caregiver	Perceived burden (15 items) Caregiving relationship satisfaction (11 items) Caregiving ideology (5 items) Caregiving mastery (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Marwit Meuser Caregiver Grief Inventory (MM-CGI)	PRO	Full	Caregiver	Personal Sacrifice Burden (18 items) Heartfelt Sadness & Longing (15 items) Worry and Felt Isolation (17 items)	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Zarit Burden Interview (ZBI)	PRO	Full	Caregiver	Burden in the relationship (6 items) Emotional well-being (7 items) Social and family life (4 items) Finances (1 item) Loss of control over one's life (4 items) Personal strain (11 items) Role strain (6 items) 3-factor solution (Knight, 2000) Embarrassment/anger (9 items) Self-criticism (2 items) Patient dependency (3 items)	Not applicable	Not applicable	Rare dementia	ERN-RND	Link
Caregiver Appraisal Scale (CAS)	PRO	Full	Caregiver	Caregiving burden (9 items) Caregiving satisfaction (6 items) Caregiving mastery (4 items) Caregiving demand (3 items) Caregiving impact (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Burden of Treatment Questionnaire (TBQ)	PRO	Full	Adult Aged	Burden of treatment (15 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
EORTC QLQ - Elderly Cancer Patients Module (EORTC QLQ-ELD14)	PRO	Full	Aged	Mobility (3 or 4 items) Joint stiffness (1 item) Family support (2 or 1 items) Worries about others (2 items) Worries about future (5 or 3 items) Maintaining purpose (2 items) Burden of illness (2 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
CareGiver Oncology Quality of Life questionnaire (CarGOQoL)	PRO	Full	Caregiver	Psychological well-being (4 items) Burden (4 items) Relationship with health care (3 items) Administration and Finances (3 items) Coping (3 items) Physical well-beeing (4 items) Self-esteem (2 items) Leisure (2 items) Social support (2 items) Private Life (2 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
Schizophrenia CareGiver Quality of Life Questionnaire (S-CGQoL)	PRO	Full	Caregiver	Psychological and Physical Well-Being (5 items) Psychological Burden and Daily Life (7 items) Relationships with Spouse (3 items) Relationships with Psychiatric Team (3 items) Relationships with Family (2 items) Relationships with Friends (2 items) Material Burden (3 items)	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Swallowing Quality of Life questionnaire (SWAL-QOL)	PRO	Full	Adult	Burden (2 items) Eating duration (2 items) Eating desire (3 items) Symptom Frequency (14 items) Food selection (2 items) Communication (2 items) Fear (4 items) Mental health (5 items) Social functioning (5 items) Fatigue (3 items) Sleep (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Treatment Related Impact Measure - Weight (TRIM-W)	PRO	Full	Adult	Daily life (6 items) Weight management (3 items) Treatment burden (4 items) Experience of side effects (5 items) Psychological health (4 items)	Not applicable	Not applicable	Genetic obesity	Endo-ERN	Link
Kidney Disease Quality of Life instrument - Short form™ (KDQOL-SF™)	PRO	Full	Adult	Symptoms / Problems Effects of kidney disease on daily life Burden of kidney disease Cognitive function Work status Sexual function Quality of social interaction Sleep Social support Dialysis staff encouragement Patient satisfaction Physical functioning Role-Physical Pain General health perceptions Emotional well-being Role- emotional Social function Energy/Fatigue Overall health rating	Not applicable	Not applicable	Rare renal disease	ERN ERKNet	Link
Kidney Disease Quality of Life instrument™ - 36 items (KDQOL-36™ Survey)	PRO	Full	Adult	Symptoms/problems (12 items) Burden of kidney disease (4 items) Effects of kidney disease (8 items) SF-12 (12 items) Physical functioning (2 items) Role-Physical (2 items) Pain (1 item) General Health (1 item) Emotional Well-being (2 items) Role-emotional (2 items) Social functioning (1 item) Energy/Fatigue (1 item)	Not applicable	Not applicable	Rare renal disease	ERN ERKNet	Link
International Consultation on Incontinence Questionnaire Absorbent Pads (ICIQ-PadPROM)	PRO	Full	Adult	Pad design and physical effects Psychological effects Social effects and leakage Burden of the pad use	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Quality of Life Questionnaire - Bronchiectasis v3.1 (QOL-B v3.1)	PRO	Full	Adult	Respiratory symptoms (9 items) Physical functioning (5 items) Vitality (3 items) Role functioning (5 items) Health perceptions (4 items) Emotional functioning (4 items) Social functioning (4 items) Treatment Burden (3 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Caregiver Burden Inventory (CBI)	PRO	Full	Caregiver	Time-Dependence Burden (5 items) Developmental Burden (5 items) Physical Burden (4 items) Social Burden (5 items) Emotional Burden (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
EORTC QLQ - Pancreatic Cancer Module (EORTC QLQ-PAN26)	PRO	Full	Adult	Pancreatic pain (4 items) Digestive (2 items) Altered bowel habit (2 items) Hepatic (2 items) Body image (2 items) Health care satisfaction (2 items) Sexuality (2 items) swollen abdomen (1 item) taste changes (1 item) indigestion (1 item) flatulence (1 item) weight loss (1 item) loss of muscle strength (1 item) dry mouth (1 item) burden of treatment (1 item) fear of future health (1 item) ability to plan future	Not applicable	Not applicable	Rare pancreatic tumor	ERN EURACAN	Link
PROMIS - Plus-Heart Failure (PROMIS® - Plus-HF)	PRO	Full	Adult	Dyspnea (10 items) Fatigue (11 items) Health Behavior Outcomes (3 items) Pain Interference (2 items) Physical Function (10 items) Sleep Disturbance (6 items) Symptoms (3 items) Anger (1 item) Anxiety (5 items) Cognitive abilities (3 items) Cognitive function (3 items) Depression (6 items) Illness Burden (4 items) Life satisfaction (2 items) Ability to participate in social roles and activities (6 items) Independence (3 items) Satisfaction with social roles and activities (6 items) Social isolation (2 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Satisfaction of PAtients with Crohn's diseasE (SPACE-Q)	PRO	Full	Adult	Disease control (8 items) Symptoms transition scale (7 items) Anal symptoms transition scale (2 items) Quality of life transition scale (8 items) Tolerability (3 items) Convenience (11 items) Expectation confirmation toward efficacy (1 item) Expectation confirmation toward side effects (1 item) Expectation confirmation toward convenience (1 item) Satisfaction with treatment (10 items) Motivation (4 items) Type of treatment administration (1 item) Patient expectations about future new treatments (1 item)	Not applicable	Not applicable	Rare inflammatory bowel disease	ERNICA	Link
Asthma Symptom Utility Index (ASUI)	PRO	Full	Adult	Cough wheeze shortness of breath awakening at night	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Functional Assessment of Cancer Therapy - General (FACT-G)	PRO	Full	Adult	Physical Well-being (7 items) Social / Family Well-being (7 items) Emotional Well-being (6 items) Functional Well-being (7 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Health and Activity Limitation Index (HALex)	PRO	Full	Adult	Perceived Health Activity Limitation	Not applicable	Not applicable	Not applicable	Not applicable	Link
McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR)	PRO	Full	Adult	Physical functioning Social functioning  Emotional functioning	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Quality of Well-Being scale Self-Administered (QWB-SA)	PRO	Full	Adult	Presence/absence of chronic symptoms/problems (19 items) Physical symptoms (25 items) Mental health symptoms and behaviors (14 items) MobilityPhysical activitySocial activity / self care	Not applicable	Not applicable	Not applicable	Not applicable	Link
Brief Sexual Function Questionnaire (BSFQ)	PRO	Full	Adult	Sexual activity/Performance (10 items) Interest (2 items) Satisfaction (3 items) Physiological competence (3 items) Satisfaction with frequency of sexual activity (1 item) Sexual preferences (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Cancer Therapy Satisfaction Questionnaire (CTSQ)	PRO	Full	Adult	Expectations of Therapy (5 items) Feelings about Side Effects (4 items) Satisfaction with Therapy (7 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Family Environment Scale (FES)	PRO	Full	Caregiver Pediatric	Cohesion Expressiveness Conflict Independence Achievement orientation Intellectual-cultural orientation Active-recreational orientation Moral-religious emphasis Organization Control	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child Health Utility (CHU9D)	PRO	Full	Pediatric	Worried (1 item) Sad (1 item) Annoyed (1 item) Pain (1 item) School work (1 item) Daily routine (1 item) Tired (1 item) Joining in activities that want to (1 item) Sleep (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Time Trade Off (TTO)	PRO	Full	Adolescent Adult	Health index (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Care Through the Patient’s Eyes - GENEtic counseling for hereditary CAncer (QUOTE-GENECA)	PRO	Full	Adult	Quality of Care-Coping style prior to their first consultation Quality of Care-generalized anxiety Quality of Care-cancer-related stress reactions prior to their first consultation	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Patient Satisfaction and Preference Questionnaire (PASAPQ)	PRO	Full	Adult	Performance (7 items) Convenience (5 items) Overall satifaction Preference (1 item) Willingness to continue (1 item)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Preferences for Activities of Children (PAC)	PRO	Basic	Pediatric Adolescent Adult	Diversity intensity where with whom enjoyment preference	Not applicable	Not applicable	Rare intellectual disability	ERN ITHACA	Link
Facial Line Satisfaction Questionnaire (FLSQ)	PRO	Full	Adult	Expectations satisfaction impact preference with facial line	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
Asthma Bother Profile (ABP)	PRO	Full	Adult	Bother (15 items) Management (7 items) Knowledge of asthma (3 items) Quality of care (3 items) Confidence in self-management (1 item)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Quality of End-of-life care and Satisfaction with Treatment scale (QUEST)	PRO or ObsRO	Full	Aged	Quality of care from physicians (9 items) Quality of care from nurses (9 items) Satisfaction with physicians (6 items) Satisfaction with nurses (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Care Through the Patient’s Eyes - Inflammatory Bowel Disease (QUOTE-IBD)	PRO	Full	Adult	Competence (3 items) Courtesy (4 items) Accessibility (4 items) Information (4 items) Continuity of care (4 items) Accommodation (2 items) Autonomy (1 item) costs (1 item)	Not applicable	Not applicable	Rare inflammatory bowel disease	ERNICA	Link
Quality of Care Through the Patient’s Eyes - Chemotherapy (QUOTEchemo)	PRO	Full	Adult	Treatment-related information Prognosis information Rehabilitation information Coping information Interpersonal communication Tailored communication Affective communication	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Quality of Care Through the Patient’s Eyes - Elderly (QUOTE-Elderly)	PRO	Full	Aged	Process (8 items) Structure (8 items) Elderly-specific (16 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Quality of Care Through the Patient’s Eyes - Occupational Therapy (QUOTE-OT)	PRO	Full	Adult	Important or Not (43 items) Experiences and Problems (43 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Care Through the Patient’s Eyes - Rheumatic-Patients (QUOTE-Rheumatic-Patients)	PRO	Full	Adult	Process (8 items) Structure (8 items) Disease-specific (16 items)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Quality of Care Through the Patient’s Eyes - Chronic Non Specific Lung Disease (QUOTE-CNSLD)	PRO	Full	Adult	Process (8 items) Structure (8 items) Disease-specific (16 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Swallowing Quality of Care questionnaire (SWAL-CARE)	PRO	Full	Adult	Clinical information (6 items) General advice (5 items) Patient satisfaction (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
National Comprehensive Cancer Network Functional Assessment of Cancer Therapy Colorectal Symptom Index- 19 items (NFCSI-19)	PRO	Full	Adult	energy pain weight loss stomach cramps fatigue meeting family needs appetite sleep quality nausea hair loss bowel control diarrhea constipation numbness/ tingling temperature sensitivity bothersome side effects) worries about getting worse ability to enjoy life content with quality of life	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Cancer Patient Need Survey (CPNS)	PRO	Full	Adult	Coping needs (16 items) Help needs (9 items) Information needs (10 items) Work needs (5 items) Cancer shock needs (11 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Asthma Self-Efficacy Scale (ASES)	PRO	Full	Adult	Activities Interactions Feelings or emotions	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Knowledge, Attitude and Self-efficacy Asthma Questionnaire (KASE-AQ)	PRO	Full	Adult	Knowledge (20 items) Attitude (20 items) Self efficacy (20 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Kansas City Cardiomyopathy Questionnaire (KCCQ)	PRO	Full	Adult	Physical limitation (6 items) SymptomsFrequency (4 items) Severity (3 items) Stability (1 item) Self-efficacy and knowledge (2 items) Quality of life (Quality of life) (3 items) Social limitation (4 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Broome Pelvic Muscle Exercise Self-Efficacy Scale (PMSES)	PRO	Full	Adult	Efficacy expectations (14 items) Outcome expectations (9 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Stoma Quality of Life Index (SQLI)	PRO	Full	Adult	Psychological well-being (5 items) Physical weel-being (5 items) Body image (4 items) Pain (2 items) Sexual activity (1 item) Nutrition (3 items) Social concerns (2 items) Patient satisfaction (5 items) Improvement (1 item) Experience (1 item) Self-efficacy (4 items) Help and advice (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Asthma Therapy Assessment Questionnaire Adult (ATAQ Adult)	PRO	Full	Adult	Control (6 items) Attitude/Behavior (2 items) Knowledge (2 items) Self-efficacy (2 items) Patient/Provider communication (5 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
lnfertility Self-Efficacy scale (ISE)	PRO	Full	Adult	Self efficacy (16 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Chronic Pain Self-Efficacy Scale (CPSS)	PRO	Full	Adult	Self-efficacy for pain management (5 items) Self-efficacy for physical function (9 items) Self-efficacy for coping with symptoms (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion Battery (NIH Toolbox - Emotion Battery)	PRO	Full	Adolescent Adult	Psychological Well-Being (3 item banks) Social Relationships (5 item banks) Stress and Self-Efficacy (1 item bank) Negative Affect (10 item banks)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Self-Efficacy CAT Ages 13-17 v2.0	PRO	Basic	Adolescent Adult	Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Stress and Self-Efficacy	PRO or ObsRO	Basic	Adolescent Adult	Emotion Stress and Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Perceived Stress FF Ages 13-17 v2.0	PRO	Basic	Adolescent	Perceived Stress	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Perceived Stress FF Age 18+ v2.0	PRO	Basic	Adult	Perceived Stress	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Self-Efficacy CAT Age 18+ v2.0	PRO	Basic	Adult	Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Injection Treatment Acceptance Questionnaire (I-TAQ)	PRO	Full	Adult	Perceived efficacy (2 items) Acceptance of side effects (7 items) Injection self-efficacy (3 items) Injection convenience (7 items) Overall acceptance (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Unidimensional Self Efficacy Scale for Multiple Sclerosis (USE-MS)	PRO	Basic	Adult	Self-Efficacy (12 items)	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Arthritis Self-Efficacy Scale (ASES)	PRO	Full	Adult	Self-efficacy pain subscale (5 items) Self-efficacy function subscale (9 items) Self-efficacy other symtopms subscale (6 items)	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Rheumatoid Arthritis Self Efficacy Scale (RASE)	PRO	Full	Adult	Relaxation Relationships Function Leisure activities Exercise Sleep Medication Fatigue	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
Pulmonary Rehabilitation Adapted Index of Self-Efficacy (PRAISE)	PRO	Full	Adult	Rehabilitation	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
2-item Pain Self-Efficacy Questionnaire (PSEQ-2)	PRO	Full	Adult	Self-confidence in performing functional and social activities despite the presence of pain (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pain Self-Efficacy Questionnaire (PSEQ)	PRO	Full	Adult	Self-confidence in performing functional and social activities despite the presence of pain	Not applicable	Not applicable	Not applicable	Not applicable	Link
8-item Caregiver Self-Efficacy Scale (CSES-8)	PRO	Full	Caregiver	Caregiver Self-Efficacy (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Severe Acute Respiratory Syndrome Fear Scale (SFS)	PRO	Basic	Adult	Fear of becoming infected Fear of infecting others Fear of family members becoming infected Fear related to taking care of SARS patients Fear of death	Severe acute respiratory syndrome	140896	Rare respiratory disease	ERN LUNG	Link
Severe Acute Respiratory Syndrome Self-Efficacy Scale (SARS Self-Efficacy Scale)	PRO	Basic	Adult	Severe Acute Respiratory Syndrome Self-Efficacy (1 item)	Severe acute respiratory syndrome	140896	Rare respiratory disease	ERN LUNG	Link
NIH Toolbox - Emotion - Psychological Wellbeing	PRO or ObsRO	Full	Adolescent Adult	Psychological Well-Being (3 item banks) Social Relationships (5 item banks) Stress and Self-Efficacy (1 item bank) Negative Affect (10 item banks)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Social Relationships	PRO or ObsRO	Full	Adolescent Adult	Psychological Well-Being (3 item banks) Social Relationships (5 item banks) Stress and Self-Efficacy (1 item bank) Negative Affect (10 item banks)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Stress and Self-Efficacy - Perceived Stress	PRO or ObsRO	Basic	Adolescent Adult	Emotion (10 items) Stress and Self-Efficacy (1 item bank) Perceived Stress (14 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion -Stress and Self-Efficacy - Self-Efficacy	PRO or ObsRO	Basic	Adolescent Adult	Emotion (10 items) Stress and Self-Efficacy (1 item bank) Self-efficacy (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Self-Efficacy CAT Ages 8-12 v2.0	PRO	Basic	Adult	Self-efficacy (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Cancer Behavior Inventory (CBI)	PRO	Basic	Adult	Maintaining Activity and Independence Seeking and Understanding Medical Information Emotion Regulation Coping with Treatment Related Side Effects Accepting Cancer/ Maintaining a Positive Attitude Seeking Social Support Using Spiritual Coping	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Cancer Behavior Inventory - Brief version (CBI-B)	PRO	Basic	Adult	Maintaining Independence and Positive Attitude Participating in Medical Care Coping and Stress Management Managing Affect	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
CarGiver Inventory (CGI)	PRO	Basic	Caregiver	Managing Medical Information Caring for Care Recipient Caring for Oneself Managing Difficult Interactions/Emotions	Not applicable	Not applicable	Not applicable	Not applicable	Link
Social Relationship Coping Efficacy Scale (SRCE)	PRO	Basic	Adolescent	Social Relationship Coping Efficacy (10 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN ERN PaedCan	Link
IBD Self-efficacy Scale for Adolescents and Young Adults (IBDSES-A)	PRO	Full	Caregiver	Managing medical care Managing daily life with IBD Managing emotions Managing the future with IBD	Not applicable	Not applicable	Rare inflammatory bowel disease	ERNICA	Link
Sickle Cell Self-Efficacy Scale (SCSES)	PRO	Full	Adolescent Adult Aged	Self-Efficacy (9 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer)	PRO	Full	Adult	Understand & participate in care (4 items) Maintain positive attitude (4 items) Seek & obtain information (4 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Perceived Self-Efficacy for Fatigue Self-Management Scale (PSEFSMS)	PRO	Full	Adult	Self-Efficacy for Fatigue Self-Management (6 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Exercise Self-Efficacy Scale (EXSE)	PRO	Basic	Adult Aged	Exercise Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Assessment Questionnaire Concerning Urinary Incontinence (Contilife®)	PRO	Full	Adult	Daily activities (7 items) Efforts activities (4 items) Self-image (7 items) Emotional consequences (6 items) Sexuality (3 items) General Well-being (1 item)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Glaucoma Quality of Life Questionnaire - 36 items (GlauQOL-36)	PRO	Full	Adult	Anxiety (4 items) Self-image (5 items) Psychological (6 items) Daily life (9 items) Driving (3 items) Constraints (5 items) Care (4 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Profile of Female Sexual Function (PFSF)	PRO	Full	Adult	Sexual Desire (9 items) Sexual Pleasure (7 items) Sexual Responsiveness (7 items) Arousal (3 items) Orgasm (4 items) Sexual Self Image (4 items) Sexual Concerns (3 items) global satisfaction with sexuality (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Youth Quality of Life Instrument - Facial differences Module (YQOL-FD)	PRO	Full	Adolescent	Negative Consequences (6 items) Negative Self-Image (5 items) Stigma (10 items) Positive Consequences (5 items) Coping (4 items)	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN CRANIO ITHACA	Link
Self-Injection Assessment Questionnaire (SIAQ)	PRO	Full	Adult	Feelings about injections (2 items) Self-confidence (4 items) Satisfaction with self-injection (1 item) Self-image (1 item) Injection-site reactions (2 items) Ease of use (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Teenager's Quality of Life Index (T-QOL)	PRO	Full	Adolescent	Self-image (8 items) Physical well-being and future aspirations (4 items) Psychological impact and relationships (6 items)	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
Protection, Amount of urine loss, Frequency of UI, Adjustment, and Body or self-image related to the incontinence symptoms questionnaire-5 (PRAFAB-Q-5)	PRO	Basic	Adult	Severity of urinary incontinence (5 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
FACT/McGill Body Image Scale – Head & Neck (FACT-MBIS) (FACT-MBIS)	PRO	Full	Adult Aged	Social discomfort (10 items) Negative self-image (11 items)	Not applicable	Not applicable	Rare head and neck tumor	ERN EURACAN	Link
Glaucoma Quality of Life Questionnaire - 17 items (GlauQOL-17)	PRO	Full	Adult	Anxiety (3 items) Self-image (2 items) Psychological (2 items) Daily life (4 items) Driving (2 items) Constraints (2 items) Care (2 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Chronic Treatment Acceptance Questionnaire (ACCEPT)	PRO	Full	Adult	Acceptance-Medication Inconvenience (5 items) Acceptance-Long-term Treatment (3 items) Acceptance-Regimen Constraints (5 items) Acceptance-Side Effects (5 items) Acceptance-Effectiveness (3 items) Acceptance-General (3 items) Acceptance-Numerous Medications (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
ADherence Evaluation of OSteoporosis treatment (ADEOS)	PRO	Full	Adult Aged	Beliefs (3 items) Perceptions (2 items) Behaviour (5 items) Information (2 items)	Not applicable	Not applicable	Rare bone disease	ERN BOND	Link
Adherence to a Healthy Lifestyle questionnaire (including Food Questionnaire module) (AHLQ)	PRO	Basic	Adolescent Adult	Adherence to a Healthy Lifestyle	Not applicable	Not applicable	Genetic obesity	Endo-ERN	Link
Simplified Medication Adherence Questionnaire (SMAQ)	PRO	Full	Adult	Medication Adherence (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Medication Adherence Self-Report Inventory (MASRI)	PRO	Full	Adult	Frequency (amount of medication missed) (6 items) Correct timing of medication intake (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Brief Adherence Rating Scale (BARS)	PRO or ObsRO	Full	Adult	Oral antipsychotic medication adherence (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Adherence Starts with Knowledge 12 (ASK-12)	PRO	Full	Adult	Behavior (5 items) Health beliefs (4 items) Inconvenience/forgetfulness (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Adherence Starts with Knowledge 20 (ASK-20)	PRO	Full	Adult	Lifestyle (6 items) Attitudes and Beliefs (2 items) Help from Others (1 item) Talking With Healthcare team (3 items) Taking Medicines (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Modified-Medication Adherence Self-Report Inventory (M-MASRI)	PRO	Full	Adult	Frequency (amount of medication missed) (1 item) Correct timing of medication intake (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Celiac Dietary Adherence Test (CDAT)	PRO	Basic	Adult	Adherence to treatment	Not applicable	Not applicable	Rare gastroenterologic disease	ERNICA	Link
Social Functioning Scale (SFS2)	PRO or ObsRO	Full	Adolescent Adult	Withdrawal/social engagement (5 items) Interpersonal communication (4 items) Independence-performance (13 items) Independence-competence (13 items) Recreation (15 items) Prosocial (22 items) Employment/occupation (4 items, in the individuals version only)	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Oxford Participation and Activities Questionnaire (OxPAQ)	PRO	Full	Adult	Routine Activities (14 items) Emotional Well-Being (5 items) Social Engagement (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect FF Ages 13-17 v2.0	PRO	Basic	Adolescent	Happiness Serenity Cognitive engagement.	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Psychological Well-Being - Positive Affect	PRO or ObsRO	Basic	Adult	Emotion Psychological Well-Being Positive Affect	Not applicable	Not applicable	Not applicable	Not applicable	Link
6-item Stanford Presenteeism Scale (SPS-6)	PRO	Full	Adult	Completing Work (3 items) Avoiding Distraction (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Pain Acceptance Questionnaire - Revised (CPAQ-R)	PRO	Full	Adult	Activity engagement (11 items) Pain willingness (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Pain Acceptance Questionnaire-8 (CPAQ-8)	PRO	Full	Adult	Activity engagement (10 items) Thoughts control pain (5 items) Pain may not change (4 items) Need to avoid/control pain (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Pain Acceptance Questionnaire - Adolescent (CPAQ-A)	PRO	Full	Adolescent	Activity engagement (11 items) Pain willingness (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Pain Acceptance Questionnaire - Adolescent Short Form (CPAQ-A8)	PRO	Full	Adolescent	Activity engagement (4 items) Pain willingness (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Pain Acceptance Questionnaire - Clinician (CPAQ-C)	PRO	Full	Adult	Actuvuty Engagement (7 items) Pain Willingness (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect FF Ages 18+ v2.0	PRO	Basic	Adult	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect CAT Ages 13-17 v2.0	PRO	Basic	Adolescent	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect CAT Age 18+ v2.0	PRO	Basic	Adult	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect FF Ages 8-12 v2.0	PRO	Basic	Adolescent	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect Parent Report FF Ages 8-12 v2.0	PRO	Basic	Adolescent	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect Parent Report CAT Ages 8-12 v2.0	PRO	Basic	Adolescent	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect Parent Report CAT Ages 3-7 v2.0	PRO	Basic	Pediatric	Happiness Serenity Cognitive engagement	Not applicable	Not applicable	Not applicable	Not applicable	Link
Positive emotion, Engagement, Relationships, Meaning, and Accomplishment-Profiler (PERMA-Profiler)	PRO	Basic	Adult	Positive emotion (3 items) Engagement (3 items) Relationships (3 items) Meaning (3 items) Accomplishment (3 items) Overall wellbeing, negative emotion, loneliness, and physical health (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Engagement, Perseverance, Optimism, Connectedness, and Happiness Measure of Adolescent Well-Being. (EPOCH Measure of Adolescent Well-Being)	PRO	Full	Adolescent	Engagement Perseverance Optimism Connectedness Happiness	Not applicable	Not applicable	Not applicable	Not applicable	Link
Public Health Engagement Scale for Emergency Settings (PHEs-E®)	PRO	Full	Adult	Public Health Engagement (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Patient Health Engagement scale (PHE-s®)	PRO	Full	Adult	Public Health Engagement (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Therapeutic Engagement Questionnaire (TEQ)	PRO	Full	Caregiver	Care interactions (12 items) Care delivery (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Health Utilities Index (HUI®)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Sensation (4 levels) Mobility (5 levels) Emotion (5 levels) Cognition (4 levels) Self-care (4 levels) Pain (5 levels) Fertility (3 levels) HUI3Vision (6 levels) Hearing (6 levels) Speech (5 levels) Ambulation (6 levels) Dexterity (6 levels) Emotion (5 levels) Cognition (6 levels) Pain (5 levels)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Scale (QOLS)	PRO	Full	Adult	Material comforts (1 item) Health (1 item) Relationships (4 items) Participating in society (2 items) Self (3 items) Work (1 item) Social / Recreation (3 items) Independence (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vision and Quality of Life Index (VisQoL)	PRO	Full	Adult	Independence (1 item) Self-actualization (1 item) Social relationship (1 item) Emotional well-being (1 item) Physical well-being (1 item) Planning, organization and startegic development (1 item)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
The Geriatric Adverse Life Events Scale (GALES)	PRO	Full	Aged	Financial/Work difficulties (3 items) Physical illness/Accident (4 items) Interpersonal conflicts (6 items) Interpersonal loss (6 items) Disruption in living situation (4 items) Other life events (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Revised Liverpool Impact of Epilepsy Scale (RLIES)	PRO	Full	Adolescent Adult	Relation with spouse/partner Relationship with family Social life and activities Employment Kind of work Overall health Relationship with friends Way feel about self Plans and ambitions Standard of living Driving Independence	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Traumatic Brain Injury – Quality of Life (TBI-QOL)	PRO	Full	Adult	Mobility (32 items) Upper Extremity (33 items) Fatigue (73 items) Pain Interference (40 items) Headache Pain (13 items) Positive Affect and Well-being (32 items) Depression (28 items) Anxiety (28 items) Stigma (28 items) Resilience (27 items) Grief/Loss (17 items) Self-esteem (13 items) Anger (35 items) Emotional and Behavioral Dyscontrol (26 items) Executive Function (37 items) Cognition - General concerns (39 items) Communication/Comprehension (31 items) Ability to Participate in Social Roles and Activities (45 items) Satisfaction with Social Roles and Activities (41 items) Independence (13 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Traumatic Brain Injury – Quality of Life Short form (TBI-QOL SF)	PRO	Full	Adult	Mobility (9 items) Upper Extremity (9 items) Fatigue (10 items) Pain Interference (10 items) Headache Pain (10 items) Positive Affect and Well-being (9 items) Depression (8 items) Anxiety (10 items) Stigma (10 items) Resilience (10 items) Grief/Loss (9 items) Self-esteem (10 items) Anger (10 items) Emotional and Behavioral Dyscontrol (10 items) Executive Function (10 items) Cognition - General concerns (10 items) Communication/Comprehension (9 items) Ability to Participate in Social Roles and Activities (10 items) Satisfaction with Social Roles and Activities (10 items) Independence (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Adolescent Fecal Incontinence and Constipation Symptom Index (A-FICSI)	PRO	Full	Adolescent	Independence (6 items) Catheterization regimen (4 items) Severity of constipation (4 items) Severity of fecal incontinence (2 items) Adaptation/Bother (5 items)	Not applicable	Not applicable	Rare urogenital disease	ERN eUROGEN	Link
Impact of Vision Impairment for Residential Care™ (IVI-RC™)	PRO	Full	Aged	Reading and accessing information (9 items) Mobility and independence (11 items) Emotional well-being (8 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Rotterdam Handicap Scale (RHS)	PRO	Full	Adolescent Adult Aged	Mobility Physical independence Occupation Social integration	Not applicable	Not applicable	Rare peripheral neuropathy	ERN EURO-NMD	Link
Glaucoma Computerised Adaptive Test - Driving Scale (GlauCAT - Driving Scale)	PRO	Full	Adult	Ability to drive (13 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Chronic Generic Module – Short version - Self-reported version (DISABKIDS DCGM-12 - SR version)	PRO	Full	Pediatric Adolescent	Independence (2 items) Emotion (2 items) Social inclusion (2 items) Social exclusion (2 items) Physical limitation (2 items) Treatment (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Generic Module - Long version - Self-reported version (DISABKIDS DCGM-37 - SR version)	PRO	Full	Pediatric Adolescent	Independence (6 items) Emotion (7 items) Social inclusion (6 items) Social exclusion (6 items) Physical limitation (6 items) Treatment (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Availability and Participation Scale (Availability PS)	PRO	Basic	Adolescent	Independence and social participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Clinician Administered PTSD Scale - 5 (CAPS-5)	ClinRO	Full	Adult	PTSD Symptoms Functional impairment	Not applicable	Not applicable	Not applicable	Not applicable	Link
Devereux Child Behavior Rating Scale (DCB)	ObsRO	Full	Pediatric Adolescent	Social agression Social need, dependency Emotional over-responsiveness Inability to delay Unethical behavior Poor self-care Poor coordination and body tonus Autistic withdrawal Incontinence Anxious, fearful ideation Pathological use of senses Impulse ideation Messiness, sloppiness Pronoun confusion Inadequate need for independence and mastry Distractability Timidity with peers Poor memory and awareness Unresponsiveness to stimulation Eating disturbance	Not applicable	Not applicable	Rare pervasive developmental disorder Rare intellectual disability	Not applicable	Link
Disability Rating Scale (DRS)	PRO or ObsRO	Full	Adolescent Adult	Arousability, awareness, and responsivity (3 items) Cognitive ability for self-care activites (3 items) Dependence on others (1 item) Psychosocial adaptability (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS SexFS Bank v1.0 - Interest in Sexual Activity (PROMIS-ISA v1.0)	PRO	Basic	Adult	Interest in sexual activity (1 item) Lubrication (1 item) Vaginal discomfort (1 item) Clitoral discomfort (1 item) Labial discomfort (1 item) Erectile function (1 item) Orgasm ability (1 item) Orgasm pleasure (1 item) Oral dryness (1 item) Oral discomfort (1 item) Satisfaction (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS SexFS Bank v2.0 – Interest in Sexual Activity (PROMIS-ISA v2.0)	PRO	Basic	Adult	Interest in sexual activity (1 item) Lubrication (1 item) Vaginal discomfort (1 item) Clitoral discomfort (1 item) Labial discomfort (1 item) Erectile function (1 item) Orgasm ability (1 item) Orgasm pleasure (1 item) Oral dryness (1 item) Oral discomfort (1 item) Satisfaction (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Five Facet Mindfulness Questionnaire (FFMQ)	PRO	Full	Adult	Observing (8 items) Describing (8 items) Acting with Awareness (8 items) Non-judging of inner experience (8 items) Non-reactivity to inner experience (7 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Kentucky Inventory of Mindfulness Skills (KIMS)	PRO	Full	Adult	Observe (12 items) Describe (8 items) Act with awareness (10 items) Accept without judgment (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Mindful Attention Awareness Scale (MAAS)	PRO	Full	Adolescent Adult	Mindful Attention Awareness (15 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Self-Management Self-Test (SMST)	PRO	Full	Adult	Awareness Relationships Planning Decision making Action	Not applicable	Not applicable	Not applicable	Not applicable	Link
Screening of Activity Limitation & Safety Awareness Questionnaire (SALSA)	PRO	Full	Adolescent Adult	Mobility (4 items)  Self care (3 items) Work - hands (7 items) Dexterity - hands (5 items)	Not applicable	Not applicable	Rare diabetes mellitus	Endo-ERN	Link
Scale to Assess Unawareness of Mental Disorder (SUMD)	ClinRO	Full	Adult	Awareness of having a mental disorder Awareness of the achieved effect of medication Awareness of the social consequences of having a mental disorder Hallucinations Delusion(s) Thought disorder Inappropriate affect Unusual dress or appearance Stereotypic or ritualistic behavior Poor social judgement Poor control of aggressive impulses Poor control of sexual impulses Alogia Flat or blunt affect Avolition-Apathy Anhedonia-Asociality Poor attention Confusion-Disorientation Unusual eye contact Poor social relationships	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Insight and Treatment Attitudes Questionnaire (ITAQ)	PRO	Full	Adult	Awareness of illness and attitude to medication/hospitalisation	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Mindful Attention Awareness Scale-Adolescent (MAAS-A)	PRO	Full	Adolescent	Mindful Attention Awareness (14 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Mindful Attention Awareness Scale-5 (MAAS-5)	PRO	Full	Adolescent Adult	Mindful Attention Awareness (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Scale to Assess Unawareness of Mental Disorder - abbreviated version (SUMD - abbreviated version)	ClinRO	Full	Adult	Awareness of the disease, consequences and need for treatment (3 items) Awareness of positive symptoms (3 items) Awareness of negative symptoms (3 items)	Not applicable	Not applicable	Rare neurologic disease with psychiatric involvement	ERN-RND	Link
Breast Cancer Awareness Scale (BCAS)	PRO	Full	Adult	Knowledge of risk factors (14 items) Knowledge of signs and symptoms (10 items) Attitude to breast cancer prevention (8 items) Barriers of breast screening (9 items) Health behavior related to breast cancer awareness (12 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Pain Vigilance and Awareness Questionnaire (PVAQ)	PRO	Full	Adult	Attention to pain Attention to changes in pain	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pain Vigilance and Awareness Questionnaire - Child Version (PVAQ-C)	PRO	Full	Pediatric	Pain Vigilance and Awareness (14 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Attentive Awareness In Relationship Scale - 16 items (AAIRS-16)	PRO	Full	Caregiver	Attentive awareness (8 items) Inattention/distraction (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Attentive Awareness In Relationship Scale - 8 items (AAIRS-8)	PRO	Full	Caregiver	Attentive awareness (4 items) Inattention/distraction (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Attentive Awareness In Relationship Scale - 4 items (AAIRS-4)	PRO	Full	Caregiver	Attentive awareness (2 items) Inattention/distraction (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Childhood Health Assessment Questionnaire - Parent Version (CHAQ-PV)	ObsRO	Full	Pediatric Adolescent Adult	Disability-Dressing and Grooming, Disability-Arising Disability-Eating Disability-Walking Disability-Hygiene Disability-Reach Disability-Grip Disability-Activities Discomfort	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Parent version (HS-FOCUS Parent version)	ObsRO	Full	Pediatric Adolescent Adult Aged	Walking/Standing (10 items) Reach/Grip (12 items) Sleeping (5 items) Schooling/Work (3 items) Activities (6 items) Breathing (6 items) Overall Function (6 items)	Mucopolysaccharidosis type 2	580	Rare inborn error of metabolism	MetabERN ERN ITHACA	Link
Functional Independance Score in Hemophilia (FISH)	ObsRO	Basic	Pediatric Adolescent	Activities of daily living-grooming and eating Activities of daily living-bathing and dressing transfers-chair and floor mobility-walking mobility-step climbing mobility-running	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Spinal Muscular Atrophy Independence Scale - Upper Limb Module Caregiver Report (SMAIS-ULM Caregiver Report)	ObsRO	Full	Pediatric Adolescent Adult	bathing/hygiene dressing eating/drinking picking up/moving objects writing or coloring turning a page using a computer keyboard and mouse using a touchscreen device	Spinal Muscular Atrophy	70	Rare neuromuscular disease	ERN EURO-NMD	Link
Simple Measure of Impact of Lupus Erythematosus in Youngsters©-Parent Report (SMILEY©-Parent Report)	ObsRO	Full	Pediatric Adolescent	Effect on self (5 items) Limitations (8 items) Social (4 items) Burden of Systematic Lupus Erythematosus (7 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Pediatric Rheumatology Quality of Life Scale - Parent's Version (PRQL - Parent)	ObsRO	Full	Pediatric	Physical health (5 items) Psychosocial health (5 items)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
ABILHAND - Systemic Sclerosis	ObsRO	Basic	Pediatric Adolescent	Manual ability encompassing strenght dexterity Dressing cooking hygiene working in an office cleaning	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Duchenne Muscular Dystrophy Quality of Life Measure - Proxy (DMD QoL-Proxy)	PRO or ObsRO	Basic	Pediatric Adolescent Adult	Physical functioning Psychological functioning Social participation	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Duchenne Muscular Dystrophy Caregiver rating of change (DMD CaGI-C)	ObsRO	Full	Pediatric	Symptoms physical ability ability of daily activities social life emotions wellbeing mental wellbeing overall health	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
DISABKIDS - Module for Cystic Fibrosis - Proxy version (DISABKIDS CFM - Proxy)	ObsRO	Full	Pediatric Adolescent	Disease impact (4 items) Treatment (6 items) Symptoms (3 items)	Cystic Fibrosis	586	Rare respiratory disease	ERN LUNG ERN RARE-LIVER ERN TRANSPLANT-CHILD	Link
Achondroplasia Child Experience Measure - Impact (ACEM-Impact)	ObsRO	Full	Pediatric Adolescent	Daily functioning (13 items) Emotional well-being (6 items) Social well-being (7 items) Need for assistance/adaptive devices (5 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Achondroplasia Child Experience Measure - Symptom (ACEM-Symptom)	ObsRO	Full	Pediatric Adolescent	Physical symptoms (8 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Pompe-Paediatric Evaluation of Disability Inventory (Pompe-PEDI)	ObsRO	Basic	Pediatric Adolescent	Self care Mobility Social functioning	Glycogen storage disease due to acid maltase deficiency	365	Rare inborn error of metabolism Rare neuromuscular disease	MetabERN ERN EURO-NMD	Link
Juvenile Arthritis Multidimensional Assessment Report (Parent Proxy-Report) (JAMAR (Parent Proxy-Report))	ObsRO	Full	Pediatric Adolescent	Functional ability (15 items) Pain intensity: (1 item) quality of life (10 items) Overall well-being (1 item) Presence of pain or swelling (1 item) Morning stiffness (1 item) Level of disease activity (1 item) Disease status (1 item) Disease course from previous visit (1 item) Satisfaction with the outcome of the illness (1 item)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Achondroplasia Personal Life Experience Scale - Parent version (APLES)	ObsRO	Full	Pediatric Adolescent	Self-perception (3 items) Friends (6 items) Recreation (4 items) Kindergarten/school (3 items) Physical (5 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Communication and Symbolic Behavior Scales Developmental Profile™ Infant-Toddler Checklist (CSBS DP™ Infant-Toddler Checklist)	ObsRO	Full	Pediatric	Social (13 items) Emotion and eye gaze (4 items) Communication (4 items) Gestures (5 items) Speech (5 items) Sounds (3 items) Words (2 items) Symbolic (6 items) Understanding (2 items) Object use (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
MacArthur-Bates Communication Development Inventories-Words and Gestures (MB-CDI-WG)	ObsRO	Full	Pediatric	Part 1: Early Words (429 items)First signs of understanding (3 items)Phrases (28 items)Starting to Talk (2 items)Vocabulary Checklist: (396 items)Sound Effects and animal sounds (12 items)Animal names (36 items)Vehicles (9 items)Toys (8 items)Food and drink (30 items)Clothing (19 items)Body parts (20 items)Furniture and rooms (24 items)Small household items (36 items)Outside things and places to go (27 items)People (20 items)Games and routines (19 items)Action words (55 items)Words about time (8 items)Descriptive words (37 items)Pronouns (11 items)Question words (6 items)Prepositions and locations (11 items)Quantifiers (8 items)Part 2: Actions and Gestures (64 items)First communicative gestures (12 items)Games and routines (6 items)Actions with objects (17 items)Pretending to be a parent (13 items)Imitating other adult actions (15 items)Pretend objects (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
TNO AZL Children's Quality of Life - Parents Form (TACQOL-PF)	ObsRO	Full	Pediatric Adolescent	Problems/limitations concerning general physical functioning/complaints (BODY, 8 items) Problems/limitations concerning motor functioning (MOTOR, 8 items) Problems/limitations concerning independent daily functioning (AUTO, 8 items) Problems/limitations concerning cognitive functioning and school performances (COGNIT, 8 items) Problems/limitations in social contacts, with parents and peers (SOCIAL, 8 items) The occurrence of positive moods (EMOPOS, 8 items) The occurrence of negative moods (EMONEG, 8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
TNO-AZL Preschool children Quality of Life questionnaire (TAPQOL)	ObsRO	Full	Pediatric	Sleeping (4 items) Appetite (3 items) Lungs (3 items) Stomach (3 items) Skin (3 items) Motor functioning (4 items) : only for children 1.5 years and olderSocial functioning (3 items) : only for children 1.5 years and olderProblem behavior (7 items) Communication (4 items) : only for children 1.5 years and olderAnxiety (3 items) Positive mood (3 items) Liveliness (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Comprehensive Interview Form	ObsRO	Full	Pediatric Adolescent Adult Aged	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Domain-Level Interview Form	ObsRO	Full	Pediatric Adolescent Adult Aged	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Comprehensive Parent/Caregiver Form	ObsRO	Full	Pediatric Adolescent Adult Aged	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Domain-Level Parent/Caregiver Form	ObsRO	Full	Pediatric Adolescent Adult Aged	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Comprehensive Teacher Form	ObsRO	Full	Pediatric Adolescent Adult	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behaviour Scales III - Third Edition Domain-Level Teacher Form	ObsRO	Full	Pediatric Adolescent Adult Aged	Communication-Receptive Communication-Expressive Communication-Written Daily living skills-Personal Daily living skills-Domestic Daily living skills-Community Daily living skills-School Community Socialization-Interpersonal relationships Socialization-Play and leisure times Socialization-Coping skills Grtoss motor function Fine motor function	Not applicable	Not applicable	Not applicable	Not applicable	Link
Daily Functioning in Children with Developmental Coordination Disorder Questionnaire (DCDDaily-Q)	ObsRO	Basic	Pediatric	self-care activities fine motor activities gross motor activities	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child Health and Illness Profile - Child Edition - Parent Report Form (CHIP-CE/PRF)	ObsRO	Basic	Pediatric Adolescent	Satisfaction with health Satisfaction with self Physical comfort Emotional comfort Restricted activity Individual risk avoidance Threats to achievement Family involvement Physical activity Social Problem solving Academic performance Peer relations Acute minor disorders Acute major disorders Recurrent disorders Long-term medical Long-term surgical Psychosocial	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Evaluation of Disability Inventory Multidimensional Computer-Adaptive Testing™ (PEDI-MCAT™)	ObsRO	Full	Pediatric Adolescent	Self-care (item bank of 119 items) Mobility (item bank of 156 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
SF-10™ Health Survey for Children (SF-10™)	ObsRO	Full	Pediatric Adolescent	Physical Functioning (PF) (2 items) Role/Social Emotional-Behavioral (REB) (1 item) Role/Social Physical (RP) (1 item) Bodily Pain (BP) (1 item) General Behavior (BE) (1 item) Mental Health (MH) (1 item) Self Esteem (SE) (2 items) General Health Perceptions (GH) (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Oncology Quality of Life Scale (POQOLS)	ObsRO	Full	Pediatric Adolescent	Restriction in physical functioning and ability to maintain normal routine (9 items) General emotionality  (7 items) Response to active medical treatment (5 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Pediatric Outcomes Data Collection Instrument-Parent (PODCI-Parent)	ObsRO	Full	Pediatric Adolescent	Daltroy LH (1998): Upper extremity function (8 items) Physical function-sports (13 items) Transfers-mobility (11 items) Comfort (pain free) (3 items) Happy-satisfied (5 items) Expectations (8 items) Allen DD (2008): Upper extremity (10 items) Comfort and General Health (5 items) Self-Worth (8 items) Mobility (19 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Infant and Toddler Quality of Life Questionnaire ™ (ITQOL™)	ObsRO	Full	Pediatric	Infant/toddler concepts: Overall health (1 item) Physical Abilities (10 items) Growth and Development (10 items) Bodily Pain/Discomfort (3 items) Temperament and Moods (18 items) General Behavior Perceptions (12 items) Overall behavior (1 item)  Getting Along with Others (15 items) General Health Perceptions (11 items) Change in health (1 item) Parent concepts: Impact-Emotional (7 items) Impact-Time (7 items) Family Cohesion (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Infant and Toddler Quality of Life Questionnaire-Short Form (ITQOL-SF47)	ObsRO	Full	Pediatric	Infant/toddler concepts: Overall health (1 item) Physical Abilities (6 items) Growth and Development (5 items) Bodily Pain/Discomfort (2 items) Temperament and Moods (6 items) General Behavior Perceptions (4 items) Overall behavior (1 item)  Getting Along with Others (7 items) General Health Perceptions (5 items) Change in health (1 item) Parent concepts: Impact-Emotional (4 items) Impact-Time (4 items) Family Cohesion (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Pediatric Parent Proxy Short Form v2.0 – Mobility 8a	ObsRO	Full	Adolescent	Mobility (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v2.0 – Upper Extremity 8a	ObsRO	Basic	Pediatric	Upper Extremity (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Bank v2.0 - Upper Extremity	ObsRO	Basic	Pediatric	Upper Extremity	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Pediatric Parent Proxy Bank 2.0 - Mobility	ObsRO	Full	Adolescent	Mobility	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Bank v1.0 - Physical Activity	ObsRO	Full	Pediatric Adolescent	Physical activity	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 - Physical Activity 4a	ObsRO	Full	Pediatric Adolescent	Physical activity (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 - Physical Activity 8a	ObsRO	Full	Pediatric Adolescent	Physical activity (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
DISABKIDS - Chronic Generic Module – Short version - Proxy version (DISABKIDS DCGM-12 - Proxy)	ObsRO	Full	Pediatric Adolescent	Independence (2 items) Emotion (2 items) Social inclusion (2 items) Social exclusion (2 items) Physical limitation (2 items) Treatment (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
DISAKIDS - Chronic Generic Module - Long version - Proxy version (DISABKIDS DCGM-37 - Proxy)	ObsRO	Full	Pediatric Adolescent	Independence (6 items) Emotion (7 items) Social inclusion (6 items) Social exclusion (6 items) Physical limitation (6 items) Treatment (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 – Physical Stress Experiences 8a	ObsRO	Full	Pediatric Adolescent	Physical Stress Experiences (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 – Physical Stress Experiences 4a	ObsRO	Full	Pediatric Adolescent	Physical Stress Experiences (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Bank v1.0 - Physical Stress Experiences	ObsRO	Full	Adolescent	Physical Stress Experiences	Not applicable	Not applicable	Not applicable	Not applicable	Link
Spence Children's Anxiety Scale - Parent version (SCAS Parent)	ObsRO	Full	Pediatric Adolescent	Panic/agoraphobia (9 items) Separation anxiety (6 items) Social anxiety (6 items) Physical injury fears (5 items) Obsessive-compulsive disorder (6 items) Generalized anxiety (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Preschool Anxiety Scale (PAS)	ObsRO	Full	Pediatric	Separation anxiety (5 items) Social anxiety (6 items) Physical injury fears (7 items) Obsessive-compulsive disorder (5 items) Generalized anxiety (5 items) post-traumatic stress (6 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Community Participation Questionnaire (PCPQ)	ObsRO	Basic	Pediatric	Activities of daily living and play or leisure (19 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children's Depression Inventory 2 Parent Form (CDI 2: P)	ObsRO	Basic	Pediatric Adolescent	Affective behaviour (10 items) Image/ Ideation (6 items) Interpersonal relations (7 items) Guilt/Irritability (4 items) Emotional problems Negative mood/Physical symptoms (9 items) Negative self-esteem (6 items) Functional problems  Ineffectiveness (8 items) Interpersonal problems (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children's Depression Inventory 2 Teacher Form (CDI 2: T)	ObsRO	Basic	Pediatric Adolescent	Affective behaviour (10 items) Image/ Ideation (6 items) Interpersonal relations (7 items) Guilt/Irritability (4 items) Emotional problems Negative mood/Physical symptoms (9 items) Negative self-esteem (6 items) Functional problems Ineffectiveness (8 items) Interpersonal problems (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children’s Leisure Activities Study Survey (Proxy Report) (CLASS (Proxy Report))	ObsRO	Basic	Pediatric	Physical activity	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children’s Leisure Activities Study Survey (Self-Report) (CLASS (Self-Report))	PRO	Basic	Pediatric	Physical activity	Not applicable	Not applicable	Not applicable	Not applicable	Link
Computerized Adaptive Testing System for Measuring Self-Care Performance (CAT-SC)	ObsRO	Full	Pediatric Adolescent	Self-Care	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Aberrant Behavior Checklist Second Edition (ABC-2)	ObsRO	Full	Pediatric Adolescent Adult	Irritability (15 items) Social withdrawal (16 items) Stereotypic behavior (7 items) Hyperactivity/Noncompliance (16 items) Inappropriate speech (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Infant Toddler Social Emotional Assessment (ITSEA)	ObsRO	Full	Pediatric	Externalizing (24 items) Activity/Impulsivity Agression/Defiance Peer Aggression Internalizing (32 items) Depression/withdrawal General Anxiety Separation Distress Inhibition to Novelty Dysregulation (34 items) Sleep scale Negative Emotionality Eating Sensory Sensitivity Competence (37 items) Attention Compliance Imitation/play Mastery motivation Empathy Prosocial peer relations Maladaptive Index (13 items) Social Relatedness Index (10 items) Atypical Index (8 items) Clinical Significance (10 items) Parent's feeling about child's behavior (2 items)	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Functional Disability Inventory - Parent Form (FDI-Parent Form)	ObsRO	Full	Pediatric Adolescent	Sleep and rest (2 items) Eating (1 item) Home management (1 item) School (2 items) Ambulation (4 items) Mobility (1 item) Social interaction/Recreation (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric - Patient-Reported Outcomes – Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE)	PRO or ObsRO	Basic	Pediatric Adolescent Adult	Oral Gastrointestinal Respiratory Cardio/Circulatory Cutaneous Neurological Visual/Perceptual Attention/Memory Pain Sleep/Wake Mood Genitourinary Sexual	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link Link
Swanson, Kotkin, Agler, M-Flynn, and Pelham Rating Scale (SKAMP)	ObsRO	Full	Pediatric Adolescent	Deportment (4 items) Attention (6 items) Revised version-Classroom behaviour (8 items) Revised version-Written work (3 items) Revised version-General (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Developmental Behaviour Checklist - Parent/Primary Carer Version (DBC-P)	ObsRO	Basic	Pediatric Adolescent	Behavioural and emotional problems	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Developmental Behaviour Checklist - Teacher Version (DBC-T)	ObsRO	Basic	Pediatric Adolescent	Behavioural and emotional problems	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Developmental Behaviour Checklist - Adult Version (DBC-A)	ObsRO	Basic	Adult	Behavioural and emotional problems	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Developmental Behaviour Checklist - Short Form (DBC-P24)	ObsRO	Basic	Pediatric Adolescent	Behavioural and emotional problems	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Developmental Behaviour Checklist - Early Screen (DBC-ES)	ObsRO	Basic	Pediatric	Behavioural and emotional problems	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Rett Syndrome Behaviour Questionnaire (RSBQ)	ObsRO	Full	Adolescent	General mood (8 items) Breathing problems (5 items) Hand behaviours (6 items) Repetitive face movements (4 items) Body rocking and expressionless face (6 items) Night time behaviours (3 items) Fear/anxiety (4 items) Walking/standing (2 items)	Rett syndrome	778	Rare neurologic disease	ERN EpiCARE ERN ITHACA	Link
Conners Comprehensive Behavior Rating Scales Teacher Form (Conners CBRS Teacher Form)	ObsRO	Full	Pediatric Adolescent	Conners CBRS Content Scales  DSM-5 Symptom Scales Validity Scales  Conners Clinical Index Other Clinical Indicators  Impairment Items  Critical Items	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Brief Infant Toddler Social Emotional Assessment (BITSEA)	ObsRO	Full	Pediatric	child's behavior emotions relationships and development internalizing problem problem externalizing dysregulation problems Competence scale (11 items) parent's feelings	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Daily Parent Rating of Evening and Morning Behavior Scale, Revised (DPREMB-R)	ObsRO	Full	Pediatric	Evening and Morning Behavior (11 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Rating Inventory of Executive Function® - Preschool Version (BRIEF®-P)	ObsRO	Full	Pediatric	Inhibit Emotional Control Shift Working Memory Plan/Organize	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Anger Parent Report CAT Ages 8-12 v2.0	ObsRO	Basic	Pediatric	Anger (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Anger - Parent Report Fixed Form Ages 3-7 v2.0	ObsRO	Basic	Pediatric	Anger (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Conners Comprehensive Behavior Rating Scales Parent Form (Conners CBRS Parent Form)	ObsRO	Full	Pediatric Adolescent	Conners CBRS Content Scales  DSM-5 Symptom Scales Validity Scales  Conners Clinical Index Other Clinical Indicators  Impairment Items  Critical Items	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Vineland Adaptive Behavior Scales - Third Edition Maladaptive Behavior Domain Comprehensive Interview Form (VABS III-MBD Comprehensive Interview Form)	ObsRO	Full	Pediatric Adolescent Adult Aged	Externalizing Internalizing	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behavior Scales – Third Edition Maladaptive Behavior Domain Domain-Level Interview Form (Vineland III-MBD Domain-Level Interview Form)	ObsRO	Full	Pediatric Adolescent Adult Aged	Externalizing Internalizing	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behavior Scales – Third Edition Maladaptive Behavior Domain Comprehensive Parent/Caregiver Form (VABS III-MBD Comprehensive Parent/Caregiver)	ObsRO	Full	Pediatric Adolescent Adult Aged	Externalizing Internalizing	Not applicable	Not applicable	Not applicable	Not applicable	Link
Vineland Adaptive Behavior Scales – Third Edition Maladaptive Behavior Domain Domain-Level Parent/Caregiver Form (Vineland III-MBD Domain-Level Parent/Caregiver Form)	ObsRO	Full	Pediatric Adolescent Adult Aged	Externalizing Internalizing	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Bank v1.0 – Psychological Stress Experiences	ObsRO	Full	Pediatric Adolescent	Psychological Stress Experiences (12 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 - Psychological Stress Experiences 8a	ObsRO	Full	Pediatric Adolescent	Psychological Stress Experiences (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 – Psychological Stress Experiences 4a	ObsRO	Full	Pediatric Adolescent	Psychological Stress Experiences (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Apparent Emotion Rating Scale (AER)	ObsRO	Basic	Adolescent	pleasure interest tranquility anger anxiety sadness	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Problems Inventory (BPI-01)	ObsRO	Full	Pediatric Adolescent Adult Aged	Self-Injurious Behavior (14 items) Stereotyped Behavior (24 items) Aggressive/Destructive Behavior (11 items)	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Behavior Problems Inventory-Short Form (BPI-S)	ObsRO	Full	Pediatric Adolescent Adult Aged	Self-injurious behavior (8 items) Stereotyped behavior (12 items) Aggressive/Destructive behavior (10 items)	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Assessment of Communication & Interaction Skills (ACIS)	ObsRO	Basic	Adolescent Adult Aged	Physicality-Contacts Physicality-Gazes Physicality-Gestures Physicality-Maneuvers Physicality-Orients Physicality-Postures Information Exchange-Articulates Information Exchange-Asserts Information Exchange-Asks Information Exchange-Engages Information Exchange-Expresses Information Exchange-Modulates Information Exchange-Shares Information Exchange-Speaks Information Exchange-Sustains Relations-Collaborates Relations-Conforms Relations-Focuses Relations-Relates Relations-Respects	Not applicable	Not applicable	Not applicable	Not applicable	Link
Devereux Scales of Mental Disorders (DSMD)	ObsRO	Basic	Pediatric Adolescent	Conduct Delinquency/Attention Depression Anxiety Autism Psychotic and paranoid disorders	Not applicable	Not applicable	Not applicable	Not applicable	Link
Devereux Adolescent Behavior Rating Scale (DAB)	ObsRO	Full	Adolescent	Unethical behavior Defiant-resistive Domineering-sadistic Heterosexual interest Hyperactive-expansive Poor emotional control Need approval-dependent Emotional distance Physically frail-timid Schizoid withdrawal Bizarre speech and cognition Bizarre action Inability to delay Paranoid thinking Anxious self-blame	Not applicable	Not applicable	Not applicable	Not applicable	Link
Devereux Elementary School Behavior Rating Scale (DESB)	ObsRO	Full	Pediatric Adolescent	Classroom disturbance (4 items) Impatience (4 items) Disrespect-defiance (4 items) External blame (4 items) Achievement anxiety (4 items) External reliance (5 items) Comprehension (3 items) Inattetive - withdrawn (4 items) Irrelevant - responsiveness (4 items) Creative initiative (4 items) Need closeness to teacher (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Devereux Behavior Rating Scale-School Form (DBRS)	ObsRO	Basic	Pediatric Adolescent	Conduct Delinquency/Attention Depression Anxiety Autism Psychotic and paranoid disorders	Not applicable	Not applicable	Not applicable	Not applicable	Link
Preschool Activity Card Sort (PACS)	ObsRO	Basic	Pediatric	Self-Care Community Mobility High Demand Leisure Low Demand Leisure Social interaction Domestic activities Education	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Short Mood and Feelings Questionnaire - Parent (SMFQ-P)	ObsRO	Basic	Pediatric Adolescent	Depression	Not applicable	Not applicable	Not applicable	Not applicable	Link
Mood and Feelings Questionnaire - Parent (MFQ-P)	ObsRO	Basic	Pediatric Adolescent	Depression	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Assessment System for Children - 3rd edition - Parent Rating Scale (BASC-3-PRS)	ObsRO	Basic	Pediatric Adolescent Adult	Adaptive and problem behaviors in the community and home setting	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Assessment System for Children - 3rd edition - Teacher Rating Scale (BASC-3-TRS)	ObsRO	Basic	Pediatric Adolescent Adult	Adaptive and problem behaviors in the preschool or school setting	Not applicable	Not applicable	Not applicable	Not applicable	Link
Behavior Assessment System for Children - 3rd edition - Student Observation System (BASC-3-SOS)	ObsRO	Basic	Pediatric Adolescent Adult	child’ behavior in a classroom setting	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child and Adolescent Symptom Inventory - 5 - Parent Version (CASI-5-P)	ObsRO	Basic	Pediatric Adolescent	Emotional disorders behavioral disorders	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child and Adolescent Symptom Inventory - 5 - Teacher Version (CASI-5-T)	ObsRO	Basic	Pediatric Adolescent	Emotional disorders behavioral disorders	Not applicable	Not applicable	Not applicable	Not applicable	Link
Fear of Pain Questionnaire - Parent report (FOPQ-P)	ObsRO	Basic	Pediatric Adolescent	Fear of Pain	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child Adjustment and Parent Efficacy Scale (CAPES)	ObsRO	Basic	Pediatric Adolescent	Behaviour problems and emotional maladjustment (20 items) self-efficacy (20 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children’s Auditory Performance Scale (CHAPS)	ObsRO	Basic	Pediatric	Listening behavior	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Parent Proxy Emotion Battery	ObsRO	Basic	Pediatric	Psychological Well-Being (3 item banks) Social Relationships (4 item banks) Stress and Self-Efficacy (1 item banks) Negative Affect (10 item banks)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Social Withdrawal Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Full	Pediatric	Social Withdrawal	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Emotion - Social Relationships - Positive Social Development	ObsRO	Basic	Pediatric	Positive Social Development	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Peer Interaction Parent Report FF Ages 3-12 v2.0	ObsRO	Full	Pediatric	Positive Peer Interaction	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Peer Rejection Parent Report CAT Age 3-12 v2.0	ObsRO	Full	Pediatric	Positive Peer Interaction	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Empathic Behaviors Parent Report CAT Ages 3-12 v2.0	ObsRO	Full	Pediatric	Empathic Behaviors	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Negative Parent Relationship Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Basic	Pediatric	Negative Parent Relationship	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Parent Relationship Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Basic	Pediatric	Positive Parent Relationship	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Sibling Rejection Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Basic	Pediatric	Sibling Rejection	Not applicable	Not applicable	Not applicable	Not applicable	Link
Conners Early Childhood (Conners EC)	ObsRO	Full	Pediatric	Behavioral Scales Developmental Milestones Other Clinical Indicators Conners Early Childhood Global Index Validity scales Impairments items	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Revised Child Anxiety and Depression Scale - Parent version (RCADS-P)	ObsRO	Basic	Pediatric Adolescent	Depression and anxiety	Not applicable	Not applicable	Not applicable	Not applicable	Link
Revised Child Anxiety and Depression Scale - 25 - Parent version (RCADS-25-P)	ObsRO	Basic	Pediatric Adolescent	Depression and anxiety	Not applicable	Not applicable	Not applicable	Not applicable	Link
Focus on the Outcomes of Communication Under Six - Parent (FOCUS © - Parent)	ObsRO	Full	Pediatric	Communicative-participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
MacArthur-Bates Communication Development Inventories-Words and Sentences (MB-CDI-WS)	ObsRO	Full	Pediatric	Words children use Vocabulary checklist (680 items) Sound effects and animal sounds (12 items) Animals (43 items) Vehicles (14 items) Toys (18 items) Food and drinks (68 items) Clothing (28 items) Body parts (27 items) Small households items (50 items) Furniture and rooms (33 items) Outside things (31 items) Places to go (22 items) People (29 items) Games and routines (25 items) Action words (103 items) Descriptive words (63 items) Words about time (12 items) Pronouns (25 items) Question words (7 items) Prepositions and locations (26 items) Quantifiers and articles (17 items) Helping verbs (21 items) Connecting words (6 items) How children use words (5 items) Part 2: Sentences and grammar Word endings (4 items) Word forms (26 items) Word endings (46 items) Checkpoint item (1 item) Examples (3 items) Complexity (37 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
MacArthur-Communication Development Inventories-Infant Short Form (MacArthur-CDI-Infant SF)	ObsRO	Full	Pediatric	First signs of understanding (3 items) Phrases (28 items) Starting to Talk (2 items) Vocabulary Checklist: (396 items) Sound Effects and animal sounds (12 items) Animal names (36 items) Vehicles (9 items) Toys (8 items) Food and drink (30 items) Clothing (19 items) Body parts (20 items) Furniture and rooms (24 items) Small household items (36 items) Outside things and places to go (27 items) People (20 items) Games and routines (19 items) Action words (55 items) Words about time (8 items) Descriptive words (37 items) Pronouns (11 items) Question words (6 items) Prepositions and locations (11 items) Quantifiers (8 items) Part 2: Actions and Gestures (64 items) First communicative gestures (12 items) Games and routines (6 items) Actions with objects (17 items) Pretending to be a parent (13 items) Imitating other adult actions (15 items) Pretend objects (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link Link
MacArthur-Communication Development Inventories-Toddler Short Form (MacArthur-CDI-Toddler SF)	ObsRO	Full	Pediatric	Words children use Vocabulary checklist (680 items) Sound effects and animal sounds (12 items) Animals (43 items) Vehicles (14 items) Toys (18 items) Food and drinks (68 items) Clothing (28 items) Body parts (27 items) Small households items (50 items) Furniture and rooms (33 items) Outside things (31 items) Places to go (22 items) People (29 items) Games and routines (25 items) Action words (103 items) Descriptive words (63 items) Words about time (12 items) Pronouns (25 items) Question words (7 items) Prepositions and locations (26 items) Quantifiers and articles (17 items) Helping verbs (21 items) Connecting words (6 items) How children use words (5 items) Part 2: Sentences and grammar Word endings (4 items) Word forms (26 items) Word endings (46 items) Checkpoint item (1 item) Examples (3 items) Complexity (37 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
MacArthur Communicative Development Inventory -Level III (CDI-III)	ObsRO	Full	Pediatric	vocabulary checklist (100 items) sentence pairs (12 items) dichotomous questions (12 iems)	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Positive Affect Parent Report Fixed Form Ages 3-7 v2.0	ObsRO	Basic	Pediatric	Positive Affect	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Sadness Parent Report Fixed Form Ages 3-7 v2.0	ObsRO	Basic	Pediatric	Sadness	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Sadness Parent Report Fixed Form ages 8-12 v2.0	ObsRO	Basic	Pediatric	Sadness	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - General Life Satisfaction Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Basic	Pediatric	Life Satisfaction	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Sadness Parent Report CAT Ages 8-12 v2.0	ObsRO	Basic	Pediatric	Sadness	Not applicable	Not applicable	Not applicable	Not applicable	Link
Focus on the Outcomes of Communication Under Six-34-Parent (FOCUS ©-34-Parent)	ObsRO	Full	Pediatric	Communicative-participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Children's Visual Function Questionnaire (CVFQ)	ObsRO	Full	Pediatric	General health (1 item) General vision (2 items) Competence (13 or 15 items) Personality (5 or 9 items) Family Impact (8 or 7 items) Treatment Difficulty (5 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
NIH Toolbox - Domain-Specific Life Satisfaction Parent Report Fixed Form Ages 3-12 v2.0	ObsRO	Basic	Pediatric	Life Satisfaction	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Bank v1.0 – Family Relationships	ObsRO	Basic	Pediatric	Family Relationships	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 – Family Relationships 8a	ObsRO	Basic	Pediatric	Family Relationships (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
PROMIS - Parent Proxy Short Form v1.0 – Family Relationships 4a	ObsRO	Basic	Pediatric	Family Relationships (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Assistance to Participate Scale (APS)	ObsRO	Basic	Pediatric Adolescent	home-based play activities community-based play activities	Not applicable	Not applicable	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Lansky Play-Performance Scale for Children (LPPS)	ObsRO	Full	Pediatric Adolescent	Quality and type of usual child's play activity (1 item)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
NIH Toolbox - Perceived Stress Parent Report CAT Ages 8-12 v2.0	ObsRO	Basic	Pediatric	Perceived Stress	Not applicable	Not applicable	Not applicable	Not applicable	Link
NIH Toolbox - Self-Efficacy Parent Report CAT Ages 8-12 v2.0	ObsRO	Basic	Pediatric	Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child and Adolescent Scale of Participation (CASP)	ObsRO	Basic	Pediatric Adolescent	Participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child and Adolescent Scale of Environment (CASE)	ObsRO	Basic	Pediatric Adolescent	Participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
Child and Adolescent Factors Inventory (CAFI)	ObsRO	Basic	Pediatric Adolescent	Participation	Not applicable	Not applicable	Not applicable	Not applicable	Link
15-dimensional health-related quality of life measure (15D©)	PRO or ObsRO	Full	Adult	Mobility (1 item) Vision (1 item) Hearing (1 item) Breathing (1 item) Sleeping (1 item) Eating (1 item) Speech (1 item) Excretion (1 item) Usual Activities (1 item) Mental function (1 item) Discomfort and symptoms (1 item) Depression (1 item) Distress (1 item) Vitality (1 item) Sexual Activity (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Assessment of Quality of Life (AQoL)	PRO	Full	Adolescent Adult	Independant Living (4 items) Happiness (4 items) Mental Health (5 items) Coping (3 items) Relationships (7 items) Self Worth (3 items) Pain (3 items) Senses (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Assistive Technology Device Predisposition Assessment (ATD-PA)	PRO	Full	Adult Aged	Disability/physical functioning (9 items)Psychosocial/Psychological, Coping (33 items)Quality of life, Satisfaction, Social functioning (12 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pictured Child’s Quality of Life Self Questionnaire (AUQUEI)	PRO	Full	Pediatric	Ages 3-5/Leisure (6 items) Family environment (6 items) Duties (3 items) External world/autonomy (6 items) Ages 6-11/Leisure (6 items) Separation (6 items)  Duties (7 items) Parents (2 items) For both versions: The two first questions are open-ended and the remaing items do not correlate with any of the 4 dimensions.	Not applicable	Not applicable	Not applicable	Not applicable	Link
Centers for Disease Control and Prevention Health-Related Quality of Life Measure (CDC HRQOL-14)	PRO	Full	Adult	Activity limitation (5 items) quality of life (5 items) Symptoms-pain Symptoms-depression Symptoms-anxiety Symptoms-sleeplessness Symptoms-vitality	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Questionnaire for Arterial hypertension (CHAL)	PRO	Full	Adult	State of mind (36 items) Somatic manifestations (19 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Dermatology Quality of Life Scales (DQoLS)	PRO	Full	Adolescent Adult	Psychosocial (17 items) Embarrassment Despair Irritableness Distress Social Activities Sexual Symptoms (12 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Duke Health Profile (DUKE)	PRO	Full	Adult	Physical health Mental health Social health General health Perceived health Self-esteem Anxiety Depression Pain Disability	Not applicable	Not applicable	Not applicable	Not applicable	Link
Glasgow Health Status Questionnaires (GHSQ)	PRO	Full	Adult	General subscale (12 items) Social support subscale (3 items) Physical health subscale (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Global Quality of Life Scale (GQOL)	PRO	Full	Adult	Quality of life (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Impact of Vision Impairment (IVI)	PRO	Full	Adult	Latent trails of mobility and independence (11 items) Reading and accessing information (9 items) Emotional well-being (8 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Revidierter KINDer Lebensqualitätsfragebogen (KINDL®)	PRO or ObsRO	Full	Pediatric Adolescent	Physical (4 items) Emotional (4 items) Self-esteem (4 items) Family (4 items) Friends (4 items) School (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Patient Generated Index (PGI)	PRO	Full	Adult	quality of life (15 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Profile for the Chronically Ill (PLC)	PRO	Full	Adult	Physical Functioning (8 items) Psychological Functioning (8 items) Positive Mood (5 items) Negative Mood (8 items) Social Functioning (6 items) Social Well-being (5 items) Disease-Symptoms	Not applicable	Not applicable	Not applicable	Not applicable	Link
Perceived Quality of Life scale (PQoL)	PRO	Full	Adult	Physical health Social health Cognitive health	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q)	PRO	Full	Adolescent Adult	Physical health /activities (13 items) Feelings (14 items) Work (13 items) Household duties (10 items) School/course work (10 items) Leisure time activities (6 items) Social relations (11 items) General activities (14 items) Satisfaction with medication (1 item) Overall life satisfaction and contentment (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Schedule (QLS-BC)	PRO	Full	Adult	Living situation Social relations Family relations Leisure activities Finance Safety Health Religion Global Well-being	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life and Vision Function Questionnaire (QOLVFQ)	PRO	Full	Adult	Personal / Psychological predisposition of the patient (5 items) Long-distance visual acuity (3 items) Near visual acuity (2 items) Glare (3 items) Color vision deficiency (1 item) Superficial eye discomfort (3 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Quality of Well Being scale (QWB)	PRO	Full	Adult	Symptom/Problem Complexes (2 items) Mobility Scale (12 items) Physical activity Scale (6 items) Social Activity Scale (3 items) for Workers or Homemarker Role or Retired or Students or Non-School Subjects or Other and Self-Care	Not applicable	Not applicable	Not applicable	Not applicable	Link
Satisfaction profile (SAT-P)	PRO	Full	Adult	Psychological functioning (10 items) Mood Mental efficiency Emotional stability Self-confidence Problem solving ability Psychological autonomy Self-control Social image Couple relationship Family role  Physical functioning (9 items) Resistance to physical fatigue Physical wellbeing Physical appearance Physical mobility Level of physical activity Frequency of sexual intercourse Quality of sexual intercourse Resistance to stress Work (5 items) Type of work Organization of work Professional role Work productivity Financial situation Sleep/eating/leisure (5 items) Amount of sleep Quality of Sleep Quality of food Eating behaviour Amount of spare time Social functioning (3 items) Relationship with other members of your family Relationship with your friends Relationship with your colleagues	Not applicable	Not applicable	Not applicable	Not applicable	Link
Schedule for the Evaluation of Individual Quality of Life (SEIQoL)	PRO	Full	Adult	Quality of life	Not applicable	Not applicable	Not applicable	Not applicable	Link
Swedish Health-Related Quality of Life Survey (SWED-QUAL)	PRO	Full	Adult	Physical functioning (7 items) Mobility (1 item) Satisfaction with Physical Ability (1 item) Role Limitation due to Physical Health (3 items) Emotional Health (3 items) Emotional Well-Being Positive effect (6 items) Negative effect (6 items) Sleep problems (6 items) General Health Perception Current health (3 items) Prior health (2 items) Resistance to illness (2 items) Health concern (1 item) Family Functioning Satisfaction with family (4 items) Marital functioning (6 items) Sexual functioning (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL)	PRO	Full	Adult	Gross motor function (4 items) Fine motor function (4 items) Cognitive function (4 items) Sleeping (4 items) Pain (4 items) Social function (4 items) Limitations of daily activities (4 items) Sexuality (2 items) Vitality (4 items) Happiness (4 items) Depressive moods (4 items) Aggressiveness (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life measure for children aged 3-8 years (TedQL)	PRO or ObsRO	Full	Pediatric	Physical competence (6 items) Peer acceptance (4 items) Maternal/Family acceptance (4 items) Psychological functioning (4 items) Cognitive functioning (5 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Therapy Impact Questionnaire (TIQ)	PRO	Full	Adult	Fatigue (4 items) insomnia sleeping problems weakness feeling tired Gastrointestinal  symptoms (4 items) nausea vomiting stomachache indigestion Global health status (1 item) Functional impairment (3 items) Emotional status (4 items) Cognitive status (2 items) Social interaction (2 items) physical symptoms pain loss of appetite drowsines dry mouth difficulty breathing	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
World Health Organization Quality of Life assessment instrument (WHOQOL-100)	PRO	Full	Adult	Physical (3 facets) Pain and discomfort Energy and fatigue Sleep and rest Psychological (5 facets) Positive feelings Thinking, learning, memory and concentration Self-esteem Bodily image and appearance Negative feelings Level of independance (4 facets) Mobility Activities of daily living Dependence on medication or treatments Working capacity Social relationships (3 facets) Personal relationships Social support Sexual activity Environment (8 facets) Physical safety and security Home environment Financial resources Health and social care: availability and quality Opportunities for acquiring new information and skills Participation in and new opportunities for recreation/leisure Physical environment: Pollution/noise/traffic/climate TransportSpirituality/religion/personal beliefs (1 facet) quality of life	Not applicable	Not applicable	Not applicable	Not applicable	Link
Multidimensional Index of Life Quality (MILQ)	PRO	Full	Adult	Mental health (4 items) Physical functioning (4 items) Physical health (4 items) Cognitive functioning (4 items) Intimacy (4 items) Social functioning (4 items) Productivity (4 items) Relationships with health professionals (4 items) Financial status (4 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Warwick Child Health and Morbidity Profile (WCHMP)	ObsRO	Full	Pediatric	General Health Status (1 item) Acute Minor Illness Status (1 item) Behavioural Status (1 item) Accident Status (1 item) Acute Significant Illness Status (1 item) Hospital Admission Status (1 item) Immunization Status (1 item) Chronic Illness Status (1 item) Functional Health Status (1 item) Health Related Quality of Life (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Youth Quality of Life Instrument (YQOL™)	PRO	Full	Adolescent	Sense of Self Social Relationships Culture and community General Quality of Life	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Systemic Inventory (QLSI)	PRO	Full	Adult	Physical Health Cognitive functioning Social life Marital life Work Housekeeping Leisure Affectivity Spirituality	Not applicable	Not applicable	Not applicable	Not applicable	Link
Skindex (Skindex, Skindex-29, Skindex-16)	PRO	Full	Adult	Skindex:Cognitive effects (15 items) Social effects (10 items) Depression (7 items) Fear (7 items) Embarrassment (4 items) Anger (5 items) Physical discomfort (4 items) Physical limitations (9 items) Skindex-29:Emotions (10 items) Symptoms (7 items) Functioning (12 items) Treatment (item 18) Skindex-16:Emotions (7 items) Symptoms (4 items) Functioning (5 items)	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
Modified Fatigue Impact Scale (MFIS)	PRO	Full	Adult	Full-length version:Physical Subscale (9 items) Cognitive Subscale (10 items) Psychosocial Subscale (2 items) Abbreviated version:Physical Subscale (2 items) Cognitive Subscale (2 items) Psychosocial Subscale (1 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Chronic Respiratory Disease Questionnaire Self-Administered Standardized (CRQ-SAS)	PRO	Full	Adult	Dyspnea (standardized) (5 items) Fatigue (4 items) Emotional functioning (7 items) Mastery (4 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
IMPACT III	PRO	Full	Pediatric Adolescent	Bowel symptoms (7 items) Systemic symptoms (3 items) Emotional functioning (7 items) Social functioning (12 items) Body image (3 items) Tests and treatments (3 items)	Not applicable	Not applicable	Rare inflammatory bowel disease	ERNICA	Link
Fatigue Impact Scale (FIS)	PRO	Full	Adult	Cognitive functioning (10 items) Physical functioning (10 items) Psychosocial functioning (20 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Cardiac Module (PedsQL™ Cardiac Module)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Heart problems/symptoms (7 items) Treatment (5 items) Physical appearance (3 items) Treatment anxiety (4 items) Cognitive problems (5 items) for > 8 years: Communication (3 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Pediatric Quality of Life Inventory™ Pediatric Pain Questionnaire™ (PedsQL™ Pediatric Pain Questionnaire™)	PRO or ObsRO	Full	Pediatric Adolescent	Present Pain (1 item) Worst Pain (1 item) Localisation of pain (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ General Well-Being Scale (PedsQL™ General Well-Being Scale)	PRO or ObsRO	Full	Pediatric Adolescent	About Me (6 items) In General (1 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Family Information Form (PedsQL™ Family Information Form)	PRO	Full	Pediatric Adolescent Adult	Missing days at school days in bed days requiering support	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Generic Core Scales Short Form 15 (PedsQL™ Generic Core Scales Short Form 15)	PRO or ObsRO	Full	Pediatric Adolescent Adult	4 scales:Physical Functioning (5 items) Emotional Functioning (4 items) Social Functioning (3 items) School Functioning (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Healthcare Satisfaction Generic Module (PedsQL™ Healthcare Satisfaction Generic Module)	PRO	Full	Adult	Information (5 items) Inclusion of Family (4 items) Communication (5 items) Technical Skills (3 items) Emotional Needs (4 items) Overall Satisfaction (3 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Healthcare Satisfaction Hematology/Oncology Specific Module (PedsQL™ Healthcare Satisfaction Hematology/Oncology Specific Module)	PRO	Full	Adult	General Satisfaction (3 items) Information (5 items) Inclusion of family (4 items) Communication (5 items) Technical skills (4 itemsEmotional needs (4 items) 4 domains:General Satisfaction (9 items) Satisfaction With Staff Communication and Interaction Style (6 items) Satisfaction With Information Amount and Timeliness (5 items) Satisfaction With Staff's Provision of Emotional Support for the Patient and Parent (4 items)	Rare hematologic disease ; Rare neoplastic disease	97992	Rare hematologic disease	ERN EuroBloodNet	Link
Pediatric Quality of Life Inventory™ Healthcare Satisfaction Hematology/Oncology Specific Module (PedsQL™ Healthcare Satisfaction Hematology/Oncology Specific Module)	PRO	Full	Adult	General Satisfaction (3 items) Information (5 items) Inclusion of family (4 items) Communication (5 items) Technical skills (4 itemsEmotional needs (4 items) 4 domains:General Satisfaction (9 items) Satisfaction With Staff Communication and Interaction Style (6 items) Satisfaction With Information Amount and Timeliness (5 items) Satisfaction With Staff's Provision of Emotional Support for the Patient and Parent (4 items)	Rare hematologic disease ; Rare neoplastic disease	250908	Rare neoplastic disease	ERN PaedCan	Link
Pediatric Quality of Life Inventory™ Pediatric Pain Coping Inventory™ (PedsQL™ Pediatric Pain Coping Inventory™)	PRO or ObsRO	Full	Pediatric Adolescent	Cognitive Self-Instruction Seek Social Support Strive to Rest and Be Alone Cognitive Refocusing Problem-Solving Self-Efficacy	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Inventory™ Pediatric Present Functioning Visual Analogue Scales (PedsQL™ Pediatric Present Functioning Visual Analogue Scales)	PRO or ObsRO	Full	Pediatric Adolescent	Anxiety Sadness Anger Worry Fatigue Pain	Not applicable	Not applicable	Not applicable	Not applicable	Link
Liver Disease Quality of Life Questionnaire (LDQOL)	PRO	Full	Adult	Physical functioning (10 items) Role limitation-physical (4 items) Role limitation-emotional (3 items) Social functioning (2 items) Emotional well-being (5 items) Pain (2 items) Energy/fatigue (4 items) General well-being (5 items) Liver disease-related symptoms (17 items) Liver disease-related effects on activities of daily living (10 items) Concentration (7 items) Memory (6 items) Sexual functioning (3 items) Sexual problems (3 items) Sleep (5 items) Loneliness (5 items) Hopelessness (4 items) Quality of social interaction (5 items) Health distress (4 items) Self-perceived stigma of liver disease (6 items)	Not applicable	Not applicable	Rare hepatic disease	ERN RARE-LIVER	Link
Sleep Impact Scale (SIS)	PRO	Full	Adult	Daily Activities (5 items) Emotional Well-being (4 items) Emotional Impact (4 items) Energy/Fatigue (5 items) Social Well-being (6 items) Mental Fatigue (3 items) Satisfaction with Sleep (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Impact of Vision Impairment for Children (IVI-C)	PRO	Full	Pediatric Adolescent	Impact of vision impairment on participation in every day activities	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Caregiver Quality Of Life Questionnaire (Physical & Emotional) (CQLQ)	PRO	Full	Caregiver	Delusions (43 items) Hallucinations (12 items) Illusions (4 items) Behavioral disturbance (7 items) Depression (9 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Kidney Disease Questionnaire (KDQ)	PRO	Full	Adult	Physical symptoms Fatigue (6 items) Depression (5 items) Relationships with others (6 items) Frustration (3 items)	Not applicable	Not applicable	Rare renal disease	ERN ERKNet	Link
Beach Center Family Quality of Life Scale (FQOL)	PRO	Full	Pediatric Adolescent Adult	Family Interaction Parenting Emotional Wellbeing Physical / Material Well-being Disability-Related Support	Not applicable	Not applicable	Not applicable	Not applicable	Link
Global Ratings of Change Questionnaire (GRCQ)	PRO	Full	Pediatric Adolescent Adult Aged	Global change in health status or health related quality of life	Not applicable	Not applicable	Not applicable	Not applicable	Link
Health Related Quality of Life in Children with Epilepsy - Child self-report scale (CHEQOL)	PRO	Full	Pediatric	Interpersonal/Social Consequences (5 items) Worries and Concerns (5 items) Intrapersonal/Emotional Issues (5 items)  Epilepsy My Secret (5 items) Quest for Normality (5 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
NIH Toolbox - Vision-Related Quality of Life Age 18+	PRO	Basic	Adult Aged	Vision-Related Quality of Life	Not applicable	Not applicable	Not applicable	Not applicable	Link
16-dimensional health-related quality of life measure (16D©)	PRO or ObsRO	Full	Adolescent	Mobility vision hearing breathing sleeping eating speech elimination usual activities (school and hobbies) friends physical appearance mental function discomfort and symptoms depression distress and vitality	Not applicable	Not applicable	Not applicable	Not applicable	Link
17-dimensional health-related quality of life measure (17D©)	PRO or ObsRO	Full	Pediatric	Mobility (1 item) Vision (1 item) Hearing (1 item) Breathing (1 item) Sleeping (1 item) Eating (1 item) Elimination (1 item) Discomfort and symptoms (1 item) School and hobbies (1 item) Friends (1 item) Physical appearance (1 item) Depression (1 item) Anxiety (1 item) Vitality (1 item) Speech (1 item) Concentration (1 item) Learning and memory (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Immune Thrombocytopenic Purpura Patient Assessment Questionnaire (ITP-PAQ)	PRO	Full	Adult	Symptoms (6 items) Bother-Physical Health (3 items) Fatigue/Sleep (4 items) Activity (2 items) Fear (5 items) Psychological Health (5 items) Work (4 items) Social Activity (4 items) Women's Reproductive Health (6 items) quality of life (5 items)	Immune Thrombocytopenic Purpura	3002	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Quality of Life questionnaire for children & adolescents with Idiopathic Thrombocytopenic Purpura (ITP-QoL)	PRO or ObsRO	Full	Pediatric Adolescent	Treatment (4 items) Complaints (6 items) Feeling (5 items) View (10 items) Family (6 items) Support (7 items) Other (5 items) Sport (8 items) Dealing (6 items) Hospital (3 items)	Immune Thrombocytopenic Purpura	3002	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Quality of Life instrument for Primary Ciliary Dyskinesia (QoL-PCD)	PRO	Full	Adult	Physical functioning (5 items) Emotional functioning (5 items) Treatment functioning (4 items) Social functioning (3 items) Role functioning (4 items) Health perception (4 items) Vitality (3 items) Upper respiratory symptoms (4 items) Lower respiratory symptoms (6 items) Ear and hearing symptoms (2 items)	Primary ciliary dyskinesia	244	Rare respiratory disease	ERN LUNG	Link
Multiple System Atrophy health-related Quality of life scale (MSA-QoL)	PRO	Full	Adult	Motor (14 items) Nonmotor (12 items) Emotional/social (14 items)	Multiple System Atrophy	102	Rare neurologic disease	ERN-RND	Link
Quality of Life Disease Impact Scale–1 global impact item (QDIS-1-item)	PRO	Full	Adult	QoL impact on everyday activities (1 item), with disease-specific attribution	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Disease Impact Scale–7 item scale (QDIS-7-item scale)	PRO	Full	Adult	Health-Related Quality of Life impact worry about health in the future limitations in usual physical activities in work and daily activities limitations in social activities fatigue and frustration/despondency	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Disease Impact Scale–Computerized Adaptive Testing form (QDIS-CAT)	PRO	Full	Adult	Health-Related Quality of Life impact (6 items from a 25-item bank)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Disease Impact Scale–Multiple Chronic Conditions form (QDIS-MCC)	PRO	Full	Adult	Health-Related Quality of Life impact (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Duke Health Profile - 8 items (Duke-8)	PRO	Full	Adult	Physical Mental Social General Perceived health	Not applicable	Not applicable	Not applicable	Not applicable	Link
Cutaneous Lupus Erythematosus Quality of Life (CLEQoL)	PRO	Full	Adult	Functioning (12 items) Emotions (10 items) Symptoms (7 items) Body image/cosmetic issues (4 items) Photosensitivity (3 items)	Rare cutaneous lupus erythematosus	535	Rare skin disease	ERN Skin	Link
The Quality of Life General Form - 8-item (QGEN®-8)	PRO	Full	Adult	Physical function (1 item) Vitality (1 item) Mental health (1 item) Role-physical attribution (1 item) Social-physical and mental attribution (1 item) Role-emotional attribution (1 item) Pain (1 item) General health (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
The Quality of Life General Form - 10 item (QGEN®-10)	PRO	Full	Adult	Physical function (1 item) Vitality (1 item) Mental health (1 item) Role-physical attribution (1 item) Social-physical and mental attribution (1 item) Role-emotional attribution (1 item) Pain (1 item) General health (1 item) COVID specific items (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
The Quality of Life General Form - Computerized Adaptive Testing form (QGEN-CAT)	PRO	Full	Adult	Physical function (1 item) Vitality (1 item) Mental health (1 item) Role-physical attribution (1 item) Social-physical and mental attribution (1 item) Role-emotional attribution (1 item) Pain (1 item) General health (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Family Reported Outcome Measure (FROM-16)	PRO	Full	Adolescent Adult	Emotional (6 items) Personal and social life (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Skindex Mini (Skindex Mini)	PRO	Full	Adult	Symptoms (1 item) Emotions (1 item) Functioning (1 item)	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
Minneapolis-Manchester Quality of Life instrument - Adolescent Form (MMQL - Adolescent Form)	PRO	Full	Adolescent	Physical functioning (9 items) Cognitive functioning (9 items) Psychological functioning (9 items) Body image (6 items) Social functioning (6 items) Outlook on life (3 items) Intimate relations (4 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Vision-Related Quality of Life Core Measure (VCM1)	PRO	Full	Adult Aged	Vision-Related Quality of Life (10 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Hidradenitis Suppurativa-Quality of Life (HS-QoL)	PRO	Full	Adult	Physical consequences (10 items) HS symptoms (10 items) Sexual activity consequences (4 items) Emotional consequences (6 items) Social consequences (5 items) Work consequences (5 items) Social support (4 items)	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
Health-related Quality-of-life and Work Productivity questionnaire (HQWP)	PRO	Full	Adult	SF-36-Physical Component Summary (PCS) Physical Functioning (10 items) Role-Physical (4 items) Bodily Pain (2 items) General Health (5 items) Mental Component Vitality (4 items) Social Functioning (2 items) Role-Emotional (3 items) Mental Health (5 items) Work productivity Absenteeism Presenteeism	Not applicable	Not applicable	Not applicable	Not applicable	Link
Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12)	PRO	Full	Adult	Physical limitation (3 items) Symptom frequency (4 items) Quality of life (2 items) Social limitation (3 items)	Not applicable	Not applicable	Rare cardiac disease	ERN GUARD-HEART	Link
Functional Assessment of Cancer Therapy - General - Caregiver (FACT-G Caregiver)	PRO	Full	Caregiver	Physical social emotional functional	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Balanced Inventory for Spinal disorders (BIS)	PRO	Basic	Adolescent Adult Aged	physical aspect social aspect mental aspect quality of life	Not applicable	Not applicable	Rare neurologic disease	Not applicable	Link
Vision-related Quality of Life Questionnaire for Young People (VQoL-YP)	PRO	Full	Adolescent	Vision-related Quality of Life (22 items)	Not applicable	Not applicable	Rare ophthalmic disorder	ERN EYE	Link
Hidradenitis Suppurativa-Quality of Life Tool-24 (HSQoL-24)	PRO	Full	Adult	Quality of life	Not applicable	Not applicable	Rare skin disease	ERN Skin	Link
NIH Toolbox - Sensation - Quality of Life	PRO	Basic	Adult	Impact of eye diseases and treatments on daily functioning and well-being	Not applicable	Not applicable	Not applicable	Not applicable	Link
EORTC QLQ - Communication (EORTC QLQ-COMU26)	PRO	Full	Adult	Communication	Not applicable	Not applicable	Not applicable	Not applicable	Link
Quality of Life Enjoyment and Satisfaction Questionnaire - Short-Form (Q-LES-Q-SF)	PRO	Full	Adult	General activities (14 items) Satisfaction with medication Overall life satisfaction and contentment	Not applicable	Not applicable	Not applicable	Not applicable	Link
Care-related Quality of Life instrument (CarerQoL)	PRO	Basic	Caregiver	Impact of caregiving	Not applicable	Not applicable	Not applicable	Not applicable	Link
Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire (PQ-LES-Q)	PRO	Full	Pediatric Adolescent	General activities (14 items) Overall life satisfaction and contentment	Not applicable	Not applicable	Not applicable	Not applicable	Link
Living with Pulmonary Hypertension Questionnaire (LPH)	PRO	Full	Adult	Physical dimension (8 items) Emotional dimension (5 items)	Not applicable	Not applicable	Rare respiratory disease	ERN LUNG	Link
Chronic Generic Module Smiley version - Children 4-7 (DISABKIDS Smiley version)	PRO or ObsRO	Full	Pediatric Adolescent	Quality of life (1 item)	Not applicable	Not applicable	Not applicable	Not applicable	Link Link
Quality of Life in Life-Threatening Illness-Family Carer Version (QOLLTI-F)	PRO	Full	Caregiver	Carer own state (5 items) Relationships (2 items) Carers outlook (3 items) Quality of care (2 items) Patient condition (1 item) Finances (1 item) Environment (2 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Norfolk Quality of Life Fatigue Tool (Norfolk QOL-F)	PRO	Full	Adult Aged	Subjective fatigue (9 items) Problems with fatigue (11 items) Dysphoria - Depression (7 items) Reduced activities (4 items) Impaired activities of daily living (4 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Epilepsy and Learning Disabilities Quality of Life Scale (ELDQOL)	ObsRO	Full	Pediatric Adolescent Adult	Behaviour (9 items) Seizure severity (14 items) Mood (16 items) Side-effects (19 items) Seizure-related injuries physical functioning cognitive functioning social functioning parental concern communication overall quality of life overall health	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Quality of Life in Epilepsy Inventory-89 (QOLIE-89)	PRO	Full	Adult	Seizure worry (5 items) Medication effect (3 items) Health discouragement (2 items) Work / Driving / Social function (11 items) Language (5 items) Attention / Concentration (9 items) Memory (6 items) Overall Quality of Life (2 items) Emotional well-being (5 items) Role limitations: emotional (5 items) Social isolation (2 items) Social support (4 items) Energy / Fatigue (4 items) Health perceptions (6 items) Physical function (10 items) Role limitation physical (5 items) Pain (2 items) 3 additional items:Change in health (1 item) Sexual relations (1 item) Overall health (1 item)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Quality of Life in Epilepsy Inventory-Adolescents-48 (QOLIE-AD-48)	PRO	Full	Adolescent	Epilepsy impact (12 items) Memory / Concentration (10 items) Attitudes toward epilepsy (4 items) Physical functioning (5 items) Stigma (6 items) Social support (4 items) School behavior (4 items) Health perceptions (3 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Quality of Life in Epilepsy Inventory-10 (QOLIE-10)	PRO	Full	Adult	Epilepsy effects (3 items) Mental health (3 items) Role function (4 items)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Quality of Life in Epilepsy Inventory-31 (QOLIE-31)	PRO	Full	Adult	Emotional/Psychological Effects:- Seizure worry (5 items) - Overall Quality of Life (2 items) - Emotional well-being (5 items) - Energy / Fatigue (4 items) Medical/Social Effects:- Cognitive functioning (6 items) - Medication effects (3 items) - Social functioning (5 items) Overall health (1 item)	Not applicable	Not applicable	Rare epilepsy	ERN EpiCARE	Link
Neurogenic Bowel Dysfunction score (NBD score)	PRO	Full	Adolescent Adult	Frequency of bowel movements Headache, perspiration or discomfort before or during defecation Tablets against constipation Drops against constipation Time used for each defecation Frequency of digital stimulation or evacuation Frequency of faecal incontinence Medication against faecal incontinence Flatus incontinence Perianal skin problems	Spinal cord injury	90058	Rare neurologic disease	Not applicable	Link
Pediatric Quality of Life Inventory™ 3.0 Rheumatology Module (PedsQL™ 3.0 Rheumatology Module)	PRO	Full	Pediatric Adolescent	Pain and hurt (4 items) Daily activities (5 items) Treatment (5 to 7 items) Worry (0 to 3 items) Communication (0 to 3 items)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Pediatric Quality of Life Inventory™ 3.0 Rheumatology Module (PedsQL™ 3.0 Rheumatology Module)	PRO	Full	Pediatric Adolescent	Pain and hurt (4 items) Daily activities (5 items) Treatment (5 to 7 items) Worry (0 to 3 items) Communication (0 to 3 items)	Dermatomyositis	221	Rare systemic or rheumatologic disease	ERN ReCONNET ERN RITA	Link
Pediatric Quality of Life Inventory™ 3.0 Rheumatology Module (PedsQL™ 3.0 Rheumatology Module)	PRO	Full	Pediatric Adolescent	Pain and hurt (4 items) Daily activities (5 items) Treatment (5 to 7 items) Worry (0 to 3 items) Communication (0 to 3 items)	Juvenile dermatomyositis	93672	Rare systemic or rheumatological disease of childhood	ERN RITA	Link
Pediatric Quality of Life Inventory™ 3.0 Rheumatology Module (PedsQL™ 3.0 Rheumatology Module)	PRO	Full	Pediatric Adolescent	Pain and hurt (4 items) Daily activities (5 items) Treatment (5 to 7 items) Worry (0 to 3 items) Communication (0 to 3 items)	Pediatric systemic lupus erythematosus	93552	Rare systemic or rheumatological disease of childhood	ERN RITA	Link
Pediatric Quality of Life Inventory™ 3.0 Rheumatology Module (PedsQL™ 3.0 Rheumatology Module)	PRO	Full	Pediatric Adolescent	Pain and hurt (4 items) Daily activities (5 items) Treatment (5 to 7 items) Worry (0 to 3 items) Communication (0 to 3 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Pediatric Quality of Life Inventory™ Cognitive Functioning Scale™ (PedsQL™ Cognitive Functioning Scale™)	PRO	Full	Pediatric Adolescent Adult	Cognitive Functioning (6 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Work Productivity and Activity Impairment Questionnaire: TTR Amyloidosis-Caregiver, Version 2.0 (WPAI:TTR Amyloidosis-CG v2.0)	PRO	Full	Caregiver	Work productivity	Hereditary ATTR amyloidosis	271861	Rare systemic or rheumatologic disease Rare cardiac disease	ERN GUARD-HEART	Link
Mean Symptom Complex Severity Score (HAESCS)	PRO	Full	Adolescent Adult Aged	Symptoms	Hereditary angioedema	91378	Rare systemic or rheumatologic disease	ERN RITA	Link
Arthritis Impact Measurement Scale (AIMS)	PRO	Full	Adult Aged	Lower extremity function-Mobility (4 items) Lower extremity function-Physical activity (5 items) Upper extremity function-Dexterity (5 items) Household activity (7 items) Social activity (4 items) Activities of daily living (4 items) Pain (4 items) Affect-Depression (6 items) Affect-Anxiety (6 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Pediatric Rheumatology Quality of Life Scale - Child's Version (PRQL - Child)	PRO	Full	Pediatric	Physical health (5 items) Psychosocial health (5 items)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Sramek Bleeding Score	PRO	Basic	Adult	Bleeding	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Sramek Bleeding Score	PRO	Basic	Adult	Bleeding	Von Willebrand disease	903	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Cleveland Global Quality of Life (CGQL)	PRO	Full	Adult	Quality of life (3 items)	Familial adenomatous polyposis	733	Rare gastroenterologic disease	ERNICA ERN GENTURIS	Link
Pulmonary Hypertension Functional Classification Self-Report (PH-FC-SR)	PRO	Full	Adult	Physical functioning	Pulmonary arterial hypertension	182090	Rare pulmonary hypertension	ERN LUNG	Link
Delis-Kaplan Executive Function System (D-KEFS)	PRO	Full	Pediatric Adolescent Adult Aged	Trail making test Verbal fluency test Design fluency test Color-word interference test Sorting test Twenty questions test Word context test Tower test Proverb test	Fetal alcohol syndrome	1915	Rare developmental defect during embryogenesis	ERN ITHACA	Link
Spinal Muscular Atrophy Independence Scale - Upper Limb Module Self-Report (SMAIS-ULM Self-Report)	PRO	Full	Pediatric Adolescent Adult	bathing/hygiene dressing eating/drinking picking up/moving objects writing or coloring turning a page using a computer keyboard and mouse using a touchscreen device	Spinal Muscular Atrophy	70	Rare neuromuscular disease	ERN EURO-NMD	Link
Self-Administered Brief Index of Lupus Damage (SA-BILD)	PRO	Full	Adult	Impact on eyes impact on brain impact on kidneys impact on lungs impact on heart impact on Blood Vessels impact on Stomach and Bowels impact on Muscles and Bones impact on skin diabetes cancer menopause	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Gastro-Intestinal Functional Outcome Scale (GIFO Scale)	PRO	Basic	Adult	bowel function comorbidities	Familial adenomatous polyposis	733	Rare gastroenterologic disease	ERNICA ERN GENTURIS	Link
Burden of Face Affected (BOFA)	PRO	Basic	Adult	Self-esteem (13 items) worry for future and care (3 items) Sexual functioning (2 items) Leisure (2 items)	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
EULAR Systemic Sclerosis Impact of Disease (EULAR ScleroID)	PRO	Full	Adult	Raynaud’s phenomenon Hand function Upper gastrointestinal tract symptoms (eg, swallowing difficulties, reflux, vomiting) Pain Fatigue Lower gastrointestinal tract symptoms (eg, swallowing difficulties, reflux, vomiting) Limitations of life choices and activities (eg, social life, personal care, work) Body mobility Breathlessness Digital ulcers	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Sickle Cell Impact Measurement Scale (SIMS)	PRO	Basic	Adult	Pain Physical-Mobility Physical-Walking and bending Physical-Perform household tasks Emotional-Tension Emotional-Mood Emotional-Satisfaction Emotional-General well-being Social Support Work/Vocation Relationships	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Sickle Cell Disease Health-Related Stigma Scale (SCD-HRSS)	PRO	Basic	Adult	Public stigma (10 items) Doctors stigma (10 items) Nurses stigma (10 items) Family stigma (10 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Measure of Sickle Cell Stigma (MoSCS)	PRO	Full	Adult	Social Exclusion Internalized Stigma Disclosure Concerns Expected Discrimination	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Simple Rathus Assertiveness Scale-Short Form (SRAS-SF)	PRO	Basic	Adult	assertiveness	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Hemophilia Caregiver Impact Measure (HCI)	PRO	Basic	Caregiver	Practical Impact Symptom Impact Lifestyle Impact Social Impact Physical Impact Emotional Impact Financial Impact Positive Emotions	Hemophilia	448	Rare hemorrhagic disorder	ERN EuroBloodNet	Link
Youth Acute Pain Functional Ability Questionnaire (YAPFAQ)	PRO	Basic	Pediatric Adolescent Adult	Activities of daily living (8 items) Movement (4 items)	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y)	PRO	Basic	Pediatric Adolescent Adult	functional ability, pain quality of life	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Central Middlesex Hospital Children's Health Diary (CMHCHD)	PRO	Basic	Pediatric Adolescent	general well-being common symptoms pain events coping strategies impact of any pain/illness events	Sickle cell anemia	232	Rare anemia	ERN EuroBloodNet	Link
Myasthenia Gravis Symptoms Patient Reported Outcome Instrument (MG Symptoms PRO)	PRO	Full	Adult	Ocular muscle weakness (5 items) Bulbar muscle weakness (10 items) Respiratory muscle weakness (3 items) Physical fatigue (15 items) Muscle weakness fatigability (9 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
FACE-Q - Craniofacial Module (FACE-Q - Craniofacial Module)	PRO	Full	Pediatric Adolescent Adult	Appearance-Birthmark (8 items) Appearance-Cheeks (9 items), Appearance-Chin (9 items) Appearance-ears (10 items) Eyes (9 items) Appearance-Face (9 itmes) Appearance-Forehead (10 items) Appearance-Head Shape (6 items) Appearance-Jaws (7 items) Appearance-Lips (9 items) Appearance-Nose (12 items) Appearance-Nostrils (6 items) Appearance-Smile (9 items) Appearance-Teeth (12 items) Function-Breathing (7 items) Function-Eating/Drinking (9 items) Function-Eyes (7 items) Function-Facial (10 items) Function-Speech (12 items) Quality of life Appearance Distress (8 items) Psychological (10 items) School (10 items) Social (10 items) Speech Distress (10 items) Adverse Effects-Ears (10 items) Adverse Effects-Eyes (7 items) Adverse Effects-Face (10 items)	Cleft lip/palate	199306	Rare systemic or rheumatologic disease	ERN CRANIO ITHACA	Link
FACE-Q - Craniofacial Module (FACE-Q - Craniofacial Module)	PRO	Full	Pediatric Adolescent Adult	Appearance-Birthmark (8 items) Appearance-Cheeks (9 items), Appearance-Chin (9 items) Appearance-ears (10 items) Eyes (9 items) Appearance-Face (9 itmes) Appearance-Forehead (10 items) Appearance-Head Shape (6 items) Appearance-Jaws (7 items) Appearance-Lips (9 items) Appearance-Nose (12 items) Appearance-Nostrils (6 items) Appearance-Smile (9 items) Appearance-Teeth (12 items) Function-Breathing (7 items) Function-Eating/Drinking (9 items) Function-Eyes (7 items) Function-Facial (10 items) Function-Speech (12 items) Quality of life Appearance Distress (8 items) Psychological (10 items) School (10 items) Social (10 items) Speech Distress (10 items) Adverse Effects-Ears (10 items) Adverse Effects-Eyes (7 items) Adverse Effects-Face (10 items)	Fibrous dysplasia of bone	249	Rare bone disease	ERN BOND	Link
FACE-Q - Craniofacial Module (FACE-Q - Craniofacial Module)	PRO	Full	Pediatric Adolescent Adult	Appearance-Birthmark (8 items) Appearance-Cheeks (9 items), Appearance-Chin (9 items) Appearance-ears (10 items) Eyes (9 items) Appearance-Face (9 itmes) Appearance-Forehead (10 items) Appearance-Head Shape (6 items) Appearance-Jaws (7 items) Appearance-Lips (9 items) Appearance-Nose (12 items) Appearance-Nostrils (6 items) Appearance-Smile (9 items) Appearance-Teeth (12 items) Function-Breathing (7 items) Function-Eating/Drinking (9 items) Function-Eyes (7 items) Function-Facial (10 items) Function-Speech (12 items) Quality of life Appearance Distress (8 items) Psychological (10 items) School (10 items) Social (10 items) Speech Distress (10 items) Adverse Effects-Ears (10 items) Adverse Effects-Eyes (7 items) Adverse Effects-Face (10 items)	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Fatigue-Patient Reported Outcome Instrument (Fatigue-PRO)	PRO	Full	Adult	Physical fatigue (9 items) Mental and cognitive fatigue (11 items) Susceptibility to fatigue (11 items)	Systemic Lupus Erythematosus	536	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Neuropathy Symptoms and Change Score (NSC)	PRO	Basic	Adult Aged	Muscle weakness-head and chest Muscle weakness-upper limb Muscle weakness-lower limb sensation-sensory loss positive neuropathic sensory symptoms positive pain symptoms autonomic	Hereditary ATTR amyloidosis	271861	Rare systemic or rheumatologic disease Rare cardiac disease	ERN GUARD-HEART	Link
Carlo Besta Neurological Institute Foundation – Myasthenia Gravis Scale (INCB-MG Scale)	PRO	Full	Adult	Muscle strength-Ocular level (1 item) Muscle strength-Generalized level (5 items) Muscle strength-Bulbar level (4 items) Muscle strength-Respiratory level (1 item) Muscle fatigability (2 items)	Myasthenia gravis	589	Rare neuromuscular disease	ERN EURO-NMD	Link
Nontransfusion-Dependent Thalassemia - Patient-Reported Outcome (NTDT-PRO©)	PRO	Full	Adult	Tiredness/Weakness (4 items) Shortness of Breath (2 items)	Beta-thalassemia	848	Rare anemia	ERN EuroBloodNet	Link
Transfusion-dependent QoL questionnaire (TranQoL)	PRO or ObsRO	Full	Pediatric Adolescent Adult	Physical health (2-10 items) Emotional health (9-13 items) Family functioning (6-10 items) School and career functioning (4-6 items) Sexual activity (1 item)	Beta-thalassemia	848	Rare anemia	ERN EuroBloodNet	Link
Juvenile Arthritis Multidimensional Assessment Report-Child Self-Report (JAMAR-Child Self-Report)	PRO	Full	Adolescent Adult	Functional ability (15 items) Pain intensity (1 item) quality of life (10 items) Overall well-being (1 item) Presence of pain or swelling (1 item) Morning stiffness (1 item) Level of disease activity (1 item) Disease status (1 item) Disease course from previous visit (1 item) Satisfaction with the outcome of the illness (1 item)	Juvenile idiopathic arthritis	92	Rare systemic or rheumatologic disease	ERN RITA	Link
Achondroplasia Personal Life Experience Scale - Self version (APLES)	PRO	Full	Adolescent	Self-perception (3 items) Friends (6 items) Recreation (4 items) Kindergarten/school (3 items) Physical (5 items)	Achondroplasia	15	Rare systemic or rheumatologic disease	ERN BOND ERN ITHACA	Link
Facioscapulohumeral Muscular Dystrophy - Health Index (FSHD-HI)	PRO	Full	Adult	Physical health mental health Social health pain fatigue gustatory dysfunction fatigue communication difficulties/facial weakness	Facioscapulohumeral dystrophy	269	Rare neuromuscular disease	ERN EURO-NMD	Link
Facioscapulohumeral Muscular Dystrophy - Rasch-built Overall Disability Scale (FSHD-RODS)	PRO	Full	Adult Aged	Motor function/disability	Facioscapulohumeral dystrophy	269	Rare neuromuscular disease	ERN EURO-NMD	Link
Impact of NF1 on Quality Of Life Questionnaire (INF1-QOL)	PRO	Full	Adult	Quality of life (14 items)	Neurofibromatosis type 1	636	Inherited cancer-predisposing syndrome	ERN GENTURIS ERN PaedCan ERN ITHACA	Link
Hand scleroDerma lived Experience scale (HAnDE)	PRO	Full	Adult	Lived experience of hand involvement	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Quality of Life - Thyroid Cancer Scale (QOL-Thyroid Cancer Scale)	PRO	Basic	Adult	Quality of life	Thyroid carcinoma	100088	Rare tumor Rare endocrine disease	ERN EURACAN ERN PaedCan Endo-ERN	Link
Myotonic Dystrophy type 1 Activity and participation scale (DM1-ActivC)	PRO	Basic	Adult	Activity of daily living	Myotonic dystrophy	206647	Rare neuromuscular disease	ERN EURO-NMD	Link
Familial Amyloid Polyneuropathy specific Rasch-built Overall Disability Scale (FAPS-RODS)	PRO	Basic	Adult	Activity of daily living	Hereditary ATTR amyloidosis	271861	Rare systemic or rheumatologic disease Rare cardiac disease	ERN GUARD-HEART	Link
Myotonia Behaviour Scale (MBS)	PRO	Full	Adult	Severity of stiffness (1 item)	Congenital myotonia	206973	Rare neuromuscular disease	ERN EURO-NMD	Link
Ocular Pain Assessment Survey (OPAS)	PRO	Basic	Adult Aged	ocular pain quality of life	Graft versus host disease	39812	Rare disorder potentially indicated for transplant or complication after transplantation	Not applicable	Link
Cortical Basal ganglia Functional Scale (CBFS)	PRO or ObsRO	Full	Adult	speaking saliva & drooling eating tasks chewing and swallowing dressing hygiene handwriting or typing doing hobbies and leisure activities turning in bed getting into or out of bed, a car, or a deep chair walking and balance once you are standing up spontaneous involuntary movements urinary control problems visual problems understanding what i read thinking clearly remembering things managing finances performing complex or multiple tasks acting appropriately around others doing things over and over repetitively diet and food preferences mood feeling anxious or panicky feeling motivated caring about others agitation sleeping at night staying awake during the day feeling physically or mentally fatigued finding your way around	Not applicable	Not applicable	Rare neurodegenerative disease	ERN-RND	Link
Cortical Basal ganglia Functional Scale (CBFS)	PRO or ObsRO	Full	Adult	speaking saliva & drooling eating tasks chewing and swallowing dressing hygiene handwriting or typing doing hobbies and leisure activities turning in bed getting into or out of bed, a car, or a deep chair walking and balance once you are standing up spontaneous involuntary movements urinary control problems visual problems understanding what i read thinking clearly remembering things managing finances performing complex or multiple tasks acting appropriately around others doing things over and over repetitively diet and food preferences mood feeling anxious or panicky feeling motivated caring about others agitation sleeping at night staying awake during the day feeling physically or mentally fatigued finding your way around	Multiple System Atrophy	102	Rare neurologic disease	ERN-RND	Link
Cortical Basal ganglia Functional Scale (CBFS)	PRO or ObsRO	Full	Adult	speaking saliva & drooling eating tasks chewing and swallowing dressing hygiene handwriting or typing doing hobbies and leisure activities turning in bed getting into or out of bed, a car, or a deep chair walking and balance once you are standing up spontaneous involuntary movements urinary control problems visual problems understanding what i read thinking clearly remembering things managing finances performing complex or multiple tasks acting appropriately around others doing things over and over repetitively diet and food preferences mood feeling anxious or panicky feeling motivated caring about others agitation sleeping at night staying awake during the day feeling physically or mentally fatigued finding your way around	Progressive supranuclear palsy	683	Rare neurologic disease	ERN-RND	Link
Progressive Supranuclear Palsy Clinical Deficits Scale (PSP-CDS)	PRO or ObsRO or ClinRO	Full	Adult	Akinesia/rigidity Bradyphrenia Communication Dysphagia Eye movements Finger dexterity Gait & balance	Progressive supranuclear palsy	683	Rare neurologic disease	ERN-RND	Link Link Link
Multicentric Castleman's Disease Symptom (MCD-SS)	PRO	Full	Adult	Cough shortness of breath loss of appetite tiredness fatigue lack of energy feeling weak sores or rash itching numbness or tingling pain fever swollen lymph nodes swelling night sweats excessive daytime sweating	Castleman disease	160	Rare hematologic disease Rare neoplastic disease	ERN EuroBloodNet	Link
Quality of life scale in Hereditary hemorrhagic telangiectasia (QoL-HHT)	PRO	Basic	Adult	Physical limitations social relationships concern about bleeding relationship with the medical profession experience of symptoms concern about the evolution of the disease	Hereditary hemorrhagic telangiectasia	774	Rare vascular diseases	ERN VASCERN	Link
erythropoietic protoporphyria quality of life questionnaire (EPP-QoL)	PRO	Basic	Pediatric Adolescent Adult	Symptoms well-being	Autosomal erythropoietic protoporphyria	79278	Rare inborn error of metabolism	MetabERN ERN Skin	Link
DMD Impact Measure (DMD Impact Measure)	PRO	Basic	Pediatric	fatigue impact strength impact cognitive function upper extremity function positive affect negative affect sleep-device symptoms mobility	Duchenne muscular dystrophy	98896	Rare neuromuscular disease	ERN EURO-NMD	Link
Systemic Sclerosis Quality of Life Questionnaire (SSc-QoL)	PRO	Basic	Adult Aged	function emotion sleep social pain	Systemic sclerosis	90291	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Desmoid-Type Fibromatosis Quality of Life Questionnaire (DTF-QoL)	PRO	Full	Adult	Emotional and psychological consequences Physical consequences Pain and discomfort Concerns about condition Job and education Doctor–patient relationship, communication and information Effect of DTF on relationships Physical limitations and consequences Diagnostic and treatment trajectory of DTF Parents and fertility Body image and sensation Supportive care Concerns around treatment and its consequences Unpredictable course and nature of DTF	Desmoid tumor	873	Rare tumor	ERN EURACAN	Link
GOunder/DTRF DEsmoid Symptom/Impact Scale (GODDESS)	PRO	Basic	Adult	Symptoms Impact	Desmoid tumor	873	Rare tumor	ERN EURACAN	Link
Patient Needs Questionnaire for people living with Fabry disease (PNQ Fabry)	PRO	Basic	Adolescent Adult	Patient treatment needs and expectations	Fabry disease	324	Rare inborn error of metabolism	MetabERN	Link
family burden of IP questionnaire (F'BoIP)	PRO	Basic	Caregiver	Family burden social life and family life professional life and renunciation daily life economic impact	Incontinentia Pigmenti	464	Rare skin disease	ERN Skin ERN ITHACA ERN EYE	Link
NPC quality-of-life questionnaires for children (NPCQLQ-C)	ObsRO	Basic	Pediatric	Mobility fine motor function playing physical health body image taking part in social event frustration related symptoms, life enjoyment time with friends feeling secure limitation in activities social relationship home settings sadness coping	Niemann-Pick disease type C	646	Rare inborn error of metabolism	MetabERN	Link
NPC quality-of-life questionnaires adults (NPCQLQ-A)	ObsRO	Basic	Adult	Feeling isolated body image feeling uncomfortable with the busyness of the world misunderstaning from others feeling in control of their life self-confidence relationships social functioning motivation mobility feeling in control relationships with healthcare staff such as doctors and nurses well-being feeling low feeling overwherlmed feeling at peace	Niemann-Pick disease type C	646	Rare inborn error of metabolism	MetabERN	Link
Child Perceptions Questionnaire (CPQ)	PRO and ObsRO	Basic	Pediatric	Quality of life	Cleft lip/palate	199306	Rare systemic or rheumatologic disease	ERN CRANIO ITHACA	Link Link Link
Huntington's disease-Behavioral Questionnaire (HD-BQ)	PRO	Basic	Adult	impulsivity avoidance complexe activities being more suspicious being not aware of the time of he day being more self-centered being less concerned with personal hygiene apathy or being emotionally labile having problems with memory being more sensitive (feel rejected, criticized, or hurt) being less aware of your whereabouts sleep too much during the day having aggressive behavior indecisiveness agitation being less emotionally available seeing or hearing things that aren’t there restlessness or fidgeting showing poor judgment acting inappropriately in social situations anhedonia or lost interest in activities that you previously enjoyed sleep problems difficulty concentrating taking more time to complete regular activities weight loss difficulty keeping track of commitments indecisiveness anxiety reduced cognitive flexibility	Huntington disease	399	Rare neurodegenerative disease	ERN-RND	Link
InfeCtions in pAtients with endocRinOpathies questionnaire (ICARO questionnaire)	PRO	Basic	Adult	upper respiratory tract infections lower respiratory tract infections gastrointestinal infections skin infections soft tissue infections sexually transmitted infections urinary tract infections	Cushing Syndrome	553	Rare endocrine disease	Endo-ERN	Link
Distress thermometer (DT)	PRO and ClinRO	Basic	Adult	Physical Concerns Emotional Concerns Practical Concerns Spiritual or Religious Concerns Social Concerns	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Child Behavior Checklist (CBCL)	PRO or ObsRO	Full	Pediatric Adolescent	Emotionally reactive Anxious/Depressed Somatic complaints Withdrawn Sleep problems Attention problems Aggressive behavior Depressive/Affective problems Anxiety problems Pervasive development/Autiism spectrum problems Attention Deficit/Hyperactivity problems Oppositional defiant problems	Not applicable	Not applicable	Not applicable	Not applicable	Link
Impact of Event Scale-Revised (IES-R)	PRO	Full	Adult	Hyperarousal (6 items) Intrusion (8 items) Avoidance (8 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Instrument for Evaluation of the Experience of Chronic Patients (IEXPAC) questionnaire	PRO	Basic	Adolescent Adult Aged	Productive interactions new relational model person’s self-management	Pulmonary arterial hypertension	182090	Rare pulmonary hypertension	ERN LUNG	Link
Screen for Child Anxiety Related Emotional Disorders - Adult & Child & Parents Versions (SCAARED and SCARED-C&P)	PRO or ObsRO	Basic	Pediatric Adolescent	Somatic/panic general anxiety separation anxiety social phobia	Not applicable	Not applicable	Not applicable	Not applicable	Link Link Link
Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19)	PRO	Basic	Pediatric Adolescent	Oral Health (5 items) Functional Well-Being (4 items) Socio-Emotional Well-Being (10 items)	Dysostosis with predominant craniofacial involvement	93453	Rare developmental defect during embryogenesis	ERN ITHACA ERN CRANIO ERN BOND	Link
Voice Handicap Index (VHI)	PRO	Full	Adult	Functional subscale (10 items) Emotional subscale (10 items) Physical subscale (10 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
Coopersmith Self-esteem Inventory (CSEI)	PRO	Basic	Pediatric Adolescent	Self-esteem	Not applicable	Not applicable	Not applicable	Not applicable	Link Link Link
State-Trait Anxiety Inventory for Children (STAI-CH)	PRO	Full	Pediatric Adolescent	Trait (T)-Anxiety scale (20 items) State (S)-Anxiety scale (20 items)	Not applicable	Not applicable	Not applicable	Not applicable	Link
European League Against Rheumatism Sjögren Syndrome Disease Activity Index (ESSDAI)	PRO and ClinRO and biomarker	Full	Adult	Constitutional (1 item) Lymphadenopathy (1 item) Articular (1 item) Muscular (1 item) Cutaneous (1 item) Glandular (1 item) Pulmonary (1 item) Renal (1 item) Peripheral nervous system (1 item) Central nervous system (1 item) Hematological (1 item) Biological (1 item)	Primary Sjögren syndrome	289390	Rare systemic or rheumatologic disease	ERN ReCONNET	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Disorder of neurotransmitter metabolism and transport	79169	Rare inborn error of metabolism	MetabERN	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Aromatic L-amino acid decarboxylase deficiency	35708	Rare inborn error of metabolism	MetabERN	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Succinic semialdehyde dehydrogenase deficiency	22	Rare inborn error of metabolism	MetabERN : ERN EpiCARE	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Mitochondrial oxidative phosphorylation disorder	223713	Rare inborn error of metabolism	MetabERN	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Pyruvate metabolism disorder	254746	Rare inborn error of metabolism	MetabERN	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Pyruvate dehydrogenase deficiency	765	Rare neurologic disease	MetabERN ERN EpiCARE ERN EURO-NMD	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Glucose transport disorder	79178	Rare inborn error of metabolism	MetabERN	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Classic glucose transporter type 1 deficiency syndrome	71277	Rare neurologic disease	MetabERN ERN EpiCARE	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Metachromatic leukodystrophy	512	Rare neurologic disease	MetabERN ERN EpiCARE ERN-RND ERN EURO-NMD	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Leukodystrophy	68356	Rare neurologic disease	ERN ITHACA ERN EpiCARE	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Alexander disease	58	Rare neurologic disease	ERN-RND ERN MetabERN ERN EpiCARE	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	SYNGAP1-related developmental and epileptic encephalopathy	544254	Rare neurologic disease	ERN EpiCARE	Link
Symptom Profile for children with neurodegnerative condition (SProND) questionnaire	ObsRO	Basic	Pediatric Adolescent	epilepsy neurobehavioural movement and mobility related breathing and swallowing daily activities	Congenital disorder of glycosylation type 1a	79318	Rare inborn error of metabolism	MetabERN ERN ITHACA ERN RARE-LIVER	Link
Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU)	PRO	Basic	Caregiver	Parental perception of stressors arising from the physical and psychosocial environment of the neonatal intensive care unit	Not applicable	Not applicable	Not applicable	Not applicable	Link
Parental Stressor Scale: Infant Hospitalization (PSS: IH)	PRO	Basic	Caregiver	Stress associated with having their infant admitted to the hospital	Not applicable	Not applicable	Not applicable	Not applicable	Link
EORTC QLQ - Information 25 (EORTC QLQ-INFO 25)	PRO	Full	Adult	Information about the disease (4 items) Medical tests (3 items) Treatment (6 items) Other services (4 items)	Not applicable	Not applicable	Rare tumor	ERN EURACAN	Link
Quality of My Life (QoML) questionnaire	PRO or ObsRO	Basic	Pediatric Adolescent	Quality of life	Not applicable	Not applicable	Rare systemic or rheumatologic disease	ERN RITA	Link
PCOM/PROM Name	Type	PROQOLID™	Age	Domains	Disease (OrphaName)	OrphaCode	Group of Diseases	ERNs	PROQOLID™ Link