PROMs Repository

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™.

Filters list of PCOMs/PROMs

PCOM/PROM NameTypePROQOLID™AgeDomainsDisease (OrphaName)OrphaCodeGroup of DiseasesERNsPROQOLID™
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
  • ORPHA:232
  • Rare anemia
EORTC - Chronic Myeloid Leukaemia (EORTC QLQ-CML24)PRO Basic
  • 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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
EORTC - 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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:448
  • Rare hemorrhagic disorder
Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro)PRO or ObsRO Basic
  • 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
  • ORPHA:448
  • Rare hemorrhagic disorder
Assessment of caregiver experience with neuromuscular disease (ACEND)PRONo
  • 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
  • ORPHA:68381
  • Rare neuromuscular disease
Achondroplasia Personal Life Experience Scale (APLES)PRONo
  • 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
  • ORPHA:15
  • Rare bone disease
Acromegaly Quality of Life questionnaire (AcroQoL)PRO Full
  • Adult
  • Physical (8 items)
  • Psychological (14 items)
Acromegaly
  • ORPHA:963
  • Rare endocrine disease
  • ERN Endo
Activities of Daily Vision & Daily Task Performance Questionnaire (ADVS)PRO Basic
  • Aged
  • Distance vision
  • Near vision
  • Glare disability
  • Night driving
  • Daytime driving
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
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
  • ORPHA:586
  • Rare respiratory disease
Activities-Specific Balance Confidence Scale (ABC scale)PRO Full
  • Adult
  • Aged
  • Balance confidence
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:166
  • Rare peripheral neuropathy
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
  • ORPHA:206647
  • Rare neuromuscular disease
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
  • ORPHA:68381
  • Rare neuromuscular disease
Addison's disease-specific quality of llife questionnaire (AddiQoL)PRONo
  • Adult
  • Fatigue
  • Symptom
  • Emotion
Addison disease
  • ORPHA:85138
  • Rare endocrine disease
  • ERN Endo
Adult Self Report (ASR)PRO Basic
  • Adult
  • anxious/depressed
  • withdrawn
  • somatic complaints
  • thought problems
  • attention problems
  • aggressive behavior
  • rule-breaking behavior
  • intrusive behavior
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:70
  • Rare neuromuscular disease
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
  • ORPHA:98503
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
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
  • ORPHA:79669
  • Rare skin disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
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
Behçet's disease Quality of Life (BD-QoL)PRO Full
  • Pediatric
  • Adolescent
  • Adult
  • Aged
  • Quality of life
Behçet disease
  • ORPHA:117
  • Rare systemic or rheumatologic disease
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
Bladder Exstrophy Epispadias Complex Quality of Life Questionnaire (BEEC-QOL )PRONo
  • Adult
  • No information
Exstrophy-epispadias complex
  • ORPHA:322
  • Rare urogenital disease
Borg Dyspnea Scale (Borg CR10 Scale®)PRO Full
  • Adult
  • Dyspnea (1 item)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
BREAST QPRO 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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
Canadian Hemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT)PRO or ObsRO Basic
  • Caregiver
  • Pediatric
  • Somatic symptoms
  • physical functioning
  • sleep disturbance
  • stigma
  • social functioning
  • fear/resentment
  • mood/behaviour
  • restrictions
  • treatment upset
  • haemophilia concern
  • energy level
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
Charcot-Marie-Tooth Health Index (CMT-HI)PRONo
  • 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
  • ORPHA:166
  • Rare peripheral neuropathy
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
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
  • ORPHA:92
  • Rare systemic or rheumatologic disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare skin disease
  • Rare systemic or rheumatologic disease
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
  • ORPHA:199306
  • Rare systemic or rheumatologic disease
Cochin 17-item Scleroderma Functional scale (CSF-17)PRONo
  • Adult
  • Aged
  • Mobility (10 items)
  • General tasks (7 items)
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Cushing's disease quality of life instrument (CushingQoL)PRO Full
  • Adult
  • Aged
  • Daily life
  • emotional
  • physical aspect
Cushing Syndrome
  • ORPHA:553
  • Rare endocrine disease
  • ERN Endo
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
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:586
  • Rare respiratory disease
Der Familien-Belastungs-Fragebogen (FABEL) - Impact on family scalePRONo
  • 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 a Rare Disease
  • Not a Rare Disease
  • 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 a Rare Disease
  • Not a Rare Disease
  • Rare skin disease
  • Rare systemic or rheumatologic disease
Disability of the Arm Shoulder and Hand (DASH)PRO Full
  • Adult
  • Dash (30 items)
  • Additional (8 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
Duchenne muscular dystrophy Upper Limb patient-reported outcome measure (DMD Upper Limb PROM)PRONo
  • Pediatric
  • Adolescent
  • Food
  • Self-care
  • Household and environment
  • Leisure and communication
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
DUX25PRONo
  • No information
  • No nformation
No information
  • No information
  • Not applicable
  • Not applicable
EORTC - 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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
EORTC - 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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
EORTC - 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
  • ORPHA:98293
  • Tumor of hematopoietic and lymphoid tissues
EORTC - 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
  • ORPHA:29073
  • Tumor of hematopoietic and lymphoid tissues
Epilepsy and Learning Disabilities Quality of Life (ELDQOL)PRONo
  • 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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
Epworth Sleepiness Scale (ESS)PRO Full
  • Adult
  • Sleep
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
EQ-5D 3L, 5L, YouthPRO 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
Esophageal-Atresia-Quality-of-life Questionnaire (EA-QOL)PRONo
  • 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
  • ORPHA:1199
  • Rare gastroenterologic disease
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
  • ORPHA:289390
  • Rare systemic or rheumatologic disease
Everyday Task QuestionnairePRONo
  • No information
  • No nformation
No information
  • No information
  • Not applicable
  • Not applicable
FACE-QPRO Full
  • Adult
  • Facial Appearance
  • Health-Related Quality of Life
  • Adverse Effects
  • Process of Care
Not a Rare Disease
  • Not a Rare Disease
  • Rare maxillo-facial surgical disease
  • Not applicable
FACE-Q Craniofacial ModulePRONo
  • 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 a Rare Disease
  • Not a Rare Disease
  • Rare maxillo-facial surgical disease
  • Not applicable
FACIT-FPRO 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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
FACIT-FatiguePRO Full
  • Adult
  • Fatigue (13 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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 a Rare Disease
  • Not a Rare Disease
  • Rare disorder potentially indicated for transplant or complication after transplantation
Family Dermatology Life Quality Index (FDLQI)PRO Full
  • Caregiver
  • Adult
  • Health-related Quality of Life (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare skin disease
  • Rare systemic or rheumatologic disease
Fatigue Severity Scale (FSS)PRO Full
  • Adolescent
  • Adult
  • Fatigue (9 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Fertigkeitenskala Münster Heidelberg (FMH) - Munster Heidelberg Abilities ScalePRONo
  • No information
  • No nformation
No information
  • No information
  • 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
Functional Disability Inventory (FDI)PRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Disability
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Functional Vision Questionnaire for Children and Young People (FVQ-CYP)PRO Basic
  • Pediatric
  • Adolescent
  • Activity of daily living
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
General Self-Efficacy Scale (GSE)PRO Basic
  • Adult
  • Self-efficacy (10 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Generalized Anxiety Disorder - 7 (GAD-7)PRO Full
  • Adult
  • Anxiety (7 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Genetic Counseling Outcome Scale (GCOS-24)PRO Basic
  • Adult
  • Genetic Counseling
Not applicable
  • Not applicable
  • Rare genetic disease
  • Not applicable
Genetic Syndromes Stressors Scale (GSSS)PRO or ObsRONo
  • Pediatric
  • Adolescent
  • Parental stressors in relation to unusual genetic illnesses (14 items)
Rare genetic developmental defect during embryogenesis
  • ORPHA:183530
  • Rare genetic developmental defect during embryogenesis
GNE myopathy- Functional activity scale (GNEM-FAS)PRONo
  • Adult
  • Mobility
  • Upper extremity use
  • Self-care
GNE myopathy
  • ORPHA:602
  • Rare neuromuscular disease
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
  • ORPHA:448
  • Rare hemorrhagic disorder
Hand scleroDerma lived Experience (HAnDE) scalePRONo
  • Adult
  • Aged
  • No information
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
Hidradenitis suppurativa Physical global assesment (HS-PGA)PRONo
  • Adult
  • Global assessment (1 item)
Not a Rare Disease
  • Not a Rare Disease
  • Rare skin disease
Hospital Anxiety and depression scale (HADS)PRO Full
  • Adult
  • Anxiety (7 items)
  • Depression (7 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Hypospadias-Specific Health-Related Quality of Life (HRQoL)PRONo
  • Pediatric
  • Adolescent
  • Adult
  • Penile appearance
  • Voiding
  • Social interaction
  • Sexual health
  • Psychological or behavioral function
Not a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
Impact of Vision Impairment–Very Low Vision Questionnaire (IVI-VLV)PRONo
  • Adult
  • Emotional Well-Being (12 items)
  • Activities of Daily Living, Mobility, and Safety (16 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Impact on participation and autonomy questionnaire (IPA)PRONo
  • 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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
Impact of NF1 on Quality Of Life questionnaire (INF1-QOL)PRONo
  • 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
  • ORPHA:636
  • Inherited cancer-predisposing syndrome
Independent Mobility Questionnaire (IMQ)PRONo
  • Adult
  • Aged
  • Ability for independent mobility
Retinitis Pigmentosa
  • ORPHA:791
  • Rare ophthalmic disorder
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
  • ORPHA:589
  • Rare neuromuscular disease
Inflammatory Rasch-built Overall Disability Scale (I-RODS)PRONo
  • Adult
  • No information
Chronic inflammatory demyelinating polyneuropathy
  • ORPHA:2932
  • Rare systemic or rheumatologic disease
  • Rare peripheral neuropathy
Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB)ClinRONo
  • Pediatric
  • Adolescent
  • Disease severity
Epidermolysis bullosa simplex
  • ORPHA:304
  • Rare skin disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
International Prostate Symptom Score (I-PSS)PRO Full
  • Adult
  • Symptoms (7 items)
  • Impact of urinary symptoms on Quality of life (1 item)
Not a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (ISTH BAT)PRO Basic
  • 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
Rare hemorrhagic disorder
  • ORPHA:248308
  • Rare hemorrhagic disorder
Interstitial Cystitis Symptom Index and Problem Index (ICSI-ICPI)PRO Full
  • Adult
  • (ICSI): Symptom Index (4 items)
  • (ICPI): Problem Index (4 items)
Interstitial cystitis
  • ORPHA:37202
  • Rare urogenital disease
Juvenile arthritis Multidimensional Activity Score (JAMAR)PROno
  • Pediatric
  • Adolescent
  • Well-being
  • Pain
  • Functional status
  • Health-related quality of life
  • Morning stiffness
  • Disease activity
  • Disease status and course
  • Jjoint disease
  • Extraarticular symptoms
  • Side effects of medications
  • Therapeutic compliance
  • Satisfaction with illness outcome
Juvenile idiopathic arthritis
  • ORPHA:92
  • Rare systemic or rheumatologic disease
KIDSCREENPRO 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
King’s Brief Interstitial Lung Disease Questionnaire (K-BILD)PRO Basic
  • Adult
  • Aged
  • Breathlessness and activities
  • Chest symptoms
  • Psychological
Interstitial lung disease
  • ORPHA:182095
  • Rare respiratory disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
KLIK (using LAST thermometer, quality of life questionnaires etc)PRONo
  • No information
  • No information
No information
  • No information
  • Not applicable
  • Not applicable
Leicester Cough Questionnaire (LCQ)PRO Full
  • Adult
  • Physical (8 items)
  • Psychological (7 items)
  • Social (4 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Living with Pulmonary Fibrosis (L-PF) Impacts Questionnaire (L-PF Impacts)PRO Full
  • Adult
  • Aged
  • shortness of breath, cough and fatigue
Idiopathic pulmonary fibrosis
  • ORPHA:2032
  • Rare respiratory disease
Lupus Impact Tracker (LIT)PRONO
  • Adult
  • Quality of life
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Lymphoedema Functioning, Disability and Health Questionnaire for Lower Limb Lymphoedema (Lymph-ICF-LL)PRONo
  • Adult
  • Aged
  • Physical function
  • Mental function
  • General tasks/household activities
  • Mobility activities
  • Life domains/social life
Not a Rare Disease
  • Not a Rare Disease
  • Primary lymphedema
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
  • ORPHA:589
  • Rare neuromuscular disease
Myasthenia Gravis Impairment Index (MGII)PRO Full
  • Adult
  • Patient reported items (22 items)
  • Examination items (6 items)
Myasthenia gravis
  • ORPHA:589
  • Rare neuromuscular disease
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
  • ORPHA:589
  • Rare neuromuscular disease
MyeloProliferative Neoplasm - 10 (MPN-10)PRONo
  • No information
  • No information
Myeloproliferative neoplasm
  • ORPHA:98274
  • Tumor of hematopoietic and lymphoid tissues
Myositis Activities Profile (MAP)PRO Basic
  • Adult
  • Movement activities
  • Activities or moving around
  • Self-care activities
  • Domestic activities
Polymyositis
  • ORPHA:732
  • Rare systemic or rheumatologic disease
  • Rare neuromuscular disease
Myositis Activities Profile (MAP)PRO Basic
  • Adult
  • Movement activities
  • Activities or moving around
  • Self-care activities
  • Domestic activities
Dermatomyositis
  • ORPHA:221
  • Rare systemic or rheumatologic disease
Myotonia behavioural scale (MBS)PRONo
  • Adult
  • Myotonia
Congenital myotonia
  • ORPHA:206973
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Night Vision Questionnaires (NVQ-10)PRONo
  • Adult
  • Aged
  • Vision impairment
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Neurofibromatosis 2 Impact on Quality of life (NFTI-QoL)PRONo
  • Adult
  • Aged
  • Quality of life (8 items)
Neurofibromatosis type 2
  • ORPHA:637
  • Inherited cancer-predisposing syndrome
Nontransfusion-dependent thalassemia - Patient-reported outcome (NTDT-PRO)PRONo
  • Adult
  • Tiredness
  • Weakness
  • Shortness of Breath, with or without Physical Activity
Beta-thalassemia
  • ORPHA:848
  • Rare anemia
Patient Acceptable Symptom State (PASS)PRONo
  • Adult
  • Patient Acceptable Symptom State (1 item)
Not a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
Patient Health Questionnaire (PHQ)PRO Full
  • Adult
  • Eating disorder
  • Somatoform disorder
  • Depression
  • Anxiety
  • Alcohol usage
  • Overall health
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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
  • ORPHA:803
  • Rare neuromuscular disease
Pediatric Charcot-Marie-Tooth Disease Quality of Life Outcome Measure (pCMT-QoL)PRONo
  • 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
  • ORPHA:166
  • Rare peripheral neuropathy
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 a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
Pediatric quality of life inventory (PedsQL) 4.0 Generic Core ScalesPRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • Physical functioning
  • Emotional functioning
  • Social functioning
  • School functioning
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Pediatric Quality of Life Inventory™ Cancer ModulePRO 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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
PedsQL epilepsy modulePRO 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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
PedsQL multidimensional fatigue scalePRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • General fatigue (6 items)
  • Sleep/Rest fatigue (6 items)
  • Cognitive fatigue (6 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
PedsQL Neurofibromatosis Type 1 ModulePRO or ObsRO Basic
  • 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
  • ORPHA:636
  • Inherited cancer-predisposing syndrome
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:70
  • Rare neuromuscular disease
PedsQL TM 1.0 Stem Cell Transplant ModulePRO 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
  • ORPHA:39812
  • Rare disorder potentially indicated for transplant or complication after transplantation
PedsQL TM 3.0 Transplant ModulePRO 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 a Rare Disease
  • Not a Rare Disease
  • Rare disorder potentially indicated for transplant or complication after transplantation
PedsQL TM Infant ScalesPRO or ObsRO Basic
  • Pediatric
  • Physical Functioning
  • Physical Symptoms
  • Emotional Functioning
  • Social Functioning
  • Cognitive Functioning
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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
  • ORPHA:37202
  • Rare urogenital disease
Penn Acoustic Neuroma Quality-of-Life scale (PANQOL)PRO Basic
  • Adult
  • Hearing,
  • Balance
  • Facial expression
  • Anxiety
  • Vitality
  • Pain
  • General health
Vestibular schwannoma
  • ORPHA:252175
  • Inherited cancer-predisposing syndrome
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Polycystic Liver Disease Questionnaire (PLD-Q)PRO Basic
  • Adult
  • Symptoms
Isolated polycystic liver disease
  • ORPHA:2924
  • Rare hepatic disease
Perceived Social Support Questionnaire (F-SozU K-6)PROno
  • Pediatric
  • Adolescent
  • Adult
  • Social Support (6 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Primary Biliary Cholangitis Questionnaire (PBC-40)PRONo
  • Adult
  • Aged
  • Fatigue function
  • Emotional function
  • Social function
  • Cognitive function
  • General symptoms
  • itch
Primary biliary cholangitis
  • ORPHA:186
  • Rare hepatic disease
PROMIS Fatigue 7aPRO Basic
  • Adult
  • Aged
  • Fatigue
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
PROMIS Global HealthPRO 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
PROMIS Pain interference 6aPRO 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
PROMIS physical function (8b V2.0)PRO Full
  • Adult
  • Physical functioning (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
PROMIS Sleep DisturbancePRO Full
  • Adult
  • Sleep disturbances
  • quality
  • Satisfaction
Not a Rare Disease
  • Not a Rare Disease
  • Rare sleep disorder
  • Not applicable
PROMIS Pediatric Profile-25 v2.0PRO 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
PROMIS-29PRO 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
PROMIS-57PRO 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
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
  • ORPHA:766
  • Rare anemia
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
  • ORPHA:766
  • Rare anemia
QUAlity of Life Assessment in Spina bifida for Teenagers, Childern and Adults (QUALAS-T, QUALAS-C, QUALAS-A)PRO or ObsRONo
  • 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
  • ORPHA:823
  • Rare developmental defect during embryogenesis
Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA)PRO Full
  • Adult
  • Quality of life
Pituitary deficiency
  • ORPHA:101957
  • Rare endocrine disease
  • ERN Endo
Quality of life in epidermolysis bullosa questionnaire (QOLEB)PRONo
  • Pediatric
  • Adolescent
  • Quality of life
Epidermolysis bullosa simplex
  • ORPHA:304
  • Rare skin disease
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
  • ORPHA:447
  • Rare anemia
Quick Systemic Lupus Activity Questionnaire (Q-SLAQ)PRONo
  • Adult
  • Symptom
  • Patient’s Global Disease Activity
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Rasch-built Overall Disability Scale (R-ODS)PRO Full
  • Adult
  • Activity
  • Social participation
Chronic inflammatory demyelinating polyneuropathy
  • ORPHA:2932
  • Rare systemic or rheumatologic disease
  • Rare peripheral neuropathy
Rasch-built Overall Disability Scale (R-ODS)PRO Full
  • Adult
  • Activity
  • Social participation
Guillain-Barré syndrome
  • ORPHA:2103
  • Rare systemic or rheumatologic disease
  • Rare peripheral neuropathy
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
  • ORPHA:365
  • Rare inborn error of metabolism
  • Rare neuromuscular disease
Rintala ScorePRO and ClinRONo
  • Adult
  • fecal continence
Anorectal malformation
  • ORPHA:96346
  • Rare urogenital disease
Satisfaction with Appearance Scale (SWAP)PRONo
  • Adult
  • Subjective satisfaction with appearance
  • social-behavioral impact of disfigurement
Not a Rare Disease
  • Not a Rare Disease
  • 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
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Self Assessment of Communication (SAC)PRONo
  • Adult
  • Communication
Not a Rare Disease
  • Not a Rare Disease
  • Rare deafness
Self-Efficacy for Managing Chronic Disease (SEMCD)PRO Full
  • Adult
  • Self-Efficacy (6 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
SF 36PRO 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
Sickle Cell Pain DiaryPRO Basic
  • Adolescent
  • Adult
  • Pain
Sickle cell anemia
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare inflammatory bowel disease
Somatic Symptom Disorder - B Criteria Scale (SSD-12)PROno
  • Adult
  • Somatic Symptom Disorder-Cognitive
  • Somatic Symptom Disorder-Affective
  • Somatic Symptom Disorder-Behavioral aspects
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Somatic symptom scale-8 (SSS-8)PROno
  • Adult
  • Somatic symptom burden
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Specific Thalassemia Quality of Life Instrument (STQOLI)PRONo
  • 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
  • ORPHA:848
  • Rare anemia
Spinal Muscular Atrophy Independence Scale - Upper Limb Module (SMAIS-ULM)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • Upper limb daily activities (22 items)
Spinal Muscular Atrophy
  • ORPHA:70
  • Rare neuromuscular disease
St George’s Respiratory Questionnaire (SGRQ)PRO Full
  • Adult
  • Symptoms
  • Activity
  • Impacts on daily life
Sarcoidosis
  • ORPHA:735
  • Rare respiratory disease
Strengths and Difficulties Questionnaire (SDQ)PRO or ObsRONo
  • Pediatric
  • Adolescent
  • Adult
  • Emotional symptoms
  • Conduct problems
  • Hyperactivity/inattention
  • Peer relationship problems
  • Prosocial behaviour
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Systemic Lupus Activity Questionnaire (SLAQ)PRO Basic
  • 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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Systemic Lupus Erythematosus Quality of Life (L-QoL)PRO Full
  • Adolescent
  • Adult
  • Systemic Lupus Erythematosus impact
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
EULAR Systemic Sclerosis Impact of Disease (ScleroID)PRO Basic
  • 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
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Systemic Sclerosis Quality of Life Scale (SSc-QoL)PRO Basic
  • Adult
  • function
  • emotional
  • sleep
  • social
  • pain
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Systemic Sclerosis Questionnaire (SySQ)PRONo
  • Adult
  • General symptoms
  • musculoskeletal symptoms
  • cardiopulmonary symptoms
  • digestive tract symptoms
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Treatment Expectation Questionnaire (TEX-Q)PRONo
  • Adult
  • Treatment Expectation: Benefit expectations
  • Harm expectations
  • Process expectations and behavioural control expectations
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL)PRO Full
  • Adult
  • Aged
  • Impact of immunosuppressive therapy (17 items)
Autoimmune bullous skin disease
  • ORPHA:79669
  • Rare skin disease
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
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
  • ORPHA:801
  • Rare systemic or rheumatologic disease
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
  • ORPHA:586
  • Rare respiratory disease
Upper Extremity Functional Index (UEFI)PRO Basic
  • 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 a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
Urethral Stricture Symptoms and Impact Measure (USSIM)PRONo
  • Adult
  • voiding
  • sexual function
Not a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
Vision Impairment in Low Luminance Questionnaire (VILLQ)PRONo
  • Adult
  • Emotional well-being (4 items)
  • reading and accessing information subscale (20 items)
  • mobility and safety subscale (13 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Vision Related Activities of Daily Living (V-ADL)PRONo
  • No information
  • No information
No information
  • No information
  • Rare ophthalmic disorder
Vision-related Quality of Life Questionnaire for Children and Young People (VQoL-CYP)PRO Basic
  • Adolescent
  • Adult
  • Quality of life
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Visual Function Index (VF-14)PRO Full
  • Adult
  • Visual impairment (18 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Viswanathan 10 questionnairePRONo
  • Adult
  • Visual Function (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
Work Ability Index (WAI)PRONo
  • Adult
  • Work ability of employees
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Work Environment Impact Scale (WEIS)PRONo
  • 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
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
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
SF-12PRO 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
Pediatric Quality of Life Inventory™ Neurofibromatosis Type 1 Module (PedsQL™ Neurofibromatosis Type 1 Module)PRO Full
  • Pediatric
  • Adolescent
  • Adult
  • Skin bother
  • Pain
  • Pain Impact
  • Pain Management
  • Cognitive functioning
  • Speech
  • Fine motors
  • Balance
  • Vision
  • Communication
  • Worry
  • Treatment
  • Medicines
  • Stomach discomfort
  • Constipation
  • Diarrhea
Neurofibromatosis type 1
  • ORPHA:636
  • Inherited cancer-predisposing syndrome
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
  • ORPHA:589
  • Rare neuromuscular disease
Ocular Treatment Index (OTI)PRONo
  • Caregiver
  • No information
Rare disorder with lens opacification
  • ORPHA:98640
  • Rare ophthalmic disorder
Multidimensional Assessment of Fatigue (MAF)PRONo
  • 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 a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
EORTC Quality of Life Questionnaire - 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
  • ORPHA:98293
  • Tumor of hematopoietic and lymphoid tissues
EORTC Quality of Life Questionnaire - 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
  • ORPHA:67038
  • Tumor of hematopoietic and lymphoid tissues
EORTC Quality of Life Questionnaire - 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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
  • ORPHA:182090
  • Rare respiratory disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare pulmonary hypertension
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 a Rare Disease
  • Not a Rare Disease
  • Rare cardiac disease
emPHasis-10PRO Full
  • Adult
  • Quality of life (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare pulmonary hypertension
World Health Organization Quality of Life assessment instrument (WHOQOL-BREF)PRO or ObsRO Basic
  • Adult
  • Physical health
  • Psychological
  • Social relationships
  • Environment
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Facioscapulohumeral muscular dystrophy-Health Index (FSHD-Health Index)PRONo
  • 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
  • ORPHA:269
  • Rare neuromuscular disease
Quality of Life in Neurological Disorders Item Bank v1.0 - Fatigue (Neuro-QoL Item Bank v1.0 - Fatigue)PRO Basic
  • Adult
  • Fatigue
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
Living with Idiopathic Pulmonary Fibrosis (L-IPF) Impacts Questionnaire (L-IPF Impacts)PRO Full
  • Adult
  • Aged
  • Quality of life (20 items)
Idiopathic pulmonary fibrosis
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:92
  • Rare systemic or rheumatologic disease
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
  • ORPHA:156152
  • Rare systemic or rheumatologic disease
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
  • ORPHA:98274
  • Tumor of hematopoietic and lymphoid tissues
Pulmonary Arterial Hypertension Quality of Life (PAHQoL)PRO Full
  • Adult
  • Impairment (41 items)
  • Functioning (17 items)
  • Quality of life (36 items)
Pulmonary arterial hypertension
  • ORPHA:182090
  • Rare pulmonary hypertension
Amyotrophic Lateral Sclerosis Assessment Scales - 40 items (ALSAQ-40)PRO Basic
  • Adult
  • Aged
  • Eating and Drinking
  • Communication
  • ADL/independence
  • Physical mobility
  • Emotional Functioning
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
Oswestry Disability Index (ODI)PRO Full
  • Adult
  • Pain (10 items)
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:589
  • Rare neuromuscular disease
Ferrans and Powers Quality of Life Index (QLI)PRO Full
  • Adult
  • Health and Functioning
  • Psychological/Spiritual
  • Social and Economic
  • Family
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA: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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
Systemic Lupus Erythematosus Quality of Life Questionnaire (LQoL)PRO Full
  • Adult
  • Quality of life (25 items)
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:334
  • Rare cardiac rythm disease
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
  • ORPHA:334
  • Rare cardiac rythm disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
Oral Health Related Quality of Life for patients with Hypodontia (OHRQoL Hypodontia)PRO Basic
  • Pediatric
  • Adolescent
  • No information
Anodontia
  • ORPHA:99797
  • Rare odontologic disease
Myelofibrosis Symptom Assessment Form (MFSAF)PRO Full
  • Adult
  • MF-related symptoms
Myeloproliferative neoplasm
  • ORPHA:98274
  • Tumor of hematopoietic and lymphoid tissues
Hemophilia Well-Being Index (HWBI)PRO Full
  • Adult
  • Well-being (8 items)
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:232
  • Rare anemia
Pediatric Quality of Life Inventory™ Duchenne Muscular Dystrophy Module (PedsQL™ Duchenne Muscular Dystrophy Module)PRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Daily activities
  • Treatment
  • Worry
  • Communication
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
Center for Neurologic Study-Lability Scale (CNS-LS)PRO Full
  • Adult
  • Labile laughter (4 items)
  • Labile tearfulness (3 items)
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:716
  • Rare inborn error of metabolism
Cystic Fibrosis Respiratory Symptom Diary (CFRSD)PRO Full
  • Adolescent
  • Adult
  • Symptoms (8 items)
  • Emotional impact (4 items)
  • Activity impact (4 items)
Cystic Fibrosis
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:223735
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ)PRO Basic
  • Adult
  • Aged
  • Symptom Interference
  • Treatment Convenience
  • Injection Site Interference
  • GI Interference
  • Treatment Satisfaction
  • and Emotional Reaction
Acromegaly
  • ORPHA:963
  • Rare endocrine disease
  • ERN Endo
Daily Health Assessment Forms (DHAFs)PRO Basic
  • Adult
  • rash
  • fatigue
  • joint pain
  • feeling of fever/chills
  • and eye redness/pain
Cryopyrin-associated periodic syndrome
  • ORPHA:208650
  • Rare systemic or rheumatologic disease
Work Productivity and Activity Impairment: Lupus (WPAI:Lupus)PRO Full
  • Adult
  • absenteeism
  • presenteeism
  • overall work impairment
  • activity impairment
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Systemic lupus erythematosus Symptom Checklist (SSC)PRO Full
  • Adult
  • Symptoms (39 items)
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Body Concealment Scale for Scleroderma (BCSS)PRO Full
  • Adult
  • Body Concealment (9 items)
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:2467
  • Rare tumor
Angioedema Activity Score (AAS)PRO Full
  • Adult
  • Disease activity (6 items)
Hereditary angioedema
  • ORPHA:91378
  • Rare systemic or rheumatologic disease
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
  • ORPHA:50251
  • Rare tumor
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
  • ORPHA:730
  • Rare renal disease
  • ERN ERKNet
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
  • ORPHA:730
  • Rare renal disease
  • ERN ERKNet
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
  • ORPHA:730
  • Rare renal disease
  • ERN ERKNet
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
  • ORPHA:37202
  • Rare urogenital disease
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
Atrial Fibrillation Impact Questionnaire (AFImpact)PRO Full
  • Adult
  • Vitality (7 items)
  • Emotional distress (8 items)
  • Sleep (3 items)
Familial atrial fibrillation
  • ORPHA:334
  • Rare cardiac rythm disease
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
  • ORPHA:70482
  • Rare tumor
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
  • ORPHA:334
  • Rare cardiac rythm disease
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
  • ORPHA:79213
  • Rare inborn error of metabolism
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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
  • Rare neurodegenerative disease
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
  • Rare neurodegenerative disease
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:448
  • Rare hemorrhagic disorder
Haemo-SYM (Haemo-SYM)PRO Full
  • Adult
  • Pain (11 items)
  • Bleeds (6 items)
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
Family Burden Ichthyosis questionnaire (FBI)PRO Full
  • Adult
  • Pain
  • Daily life
  • Familial and personal relationship
  • Work
  • Psychological impact
Ichthyosis
  • ORPHA:79354
  • Rare skin disease
Hand Disability In Systemic Sclerosis - Digital Ulcers (HDISS-DU)PRO Full
  • Adult
  • impact of systemic sclerosis-related digital ulcers on hand function
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:98896
  • Rare neuromuscular disease
Mycosis Fungoides / Sezary Syndrome - Cutaneous T-cell lymphoma Quality of life (CTCL-QoL)PRO Full
  • Adult
  • Quality of life (12 items)
Sézary syndrome
  • ORPHA:3162
  • Rare tumor
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:519
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:29073
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:39812
  • Rare disorder potentially indicated for transplant or complication after transplantation
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
  • ORPHA:44890
  • Rare tumor
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
  • ORPHA:70573
  • Rare tumor
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
  • ORPHA:29073
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:100088
  • Rare tumor
  • Rare endocrine disease
Patient Preference Questionnaire (PPQ)PRO Full
  • Adult
  • Patient Preference/Mode of administration (4 items)
Follicular lymphoma
  • ORPHA:545
  • Tumor of hematopoietic and lymphoid tissues
Patient Preference Questionnaire (PPQ)PRO Full
  • Adult
  • Patient Preference/Mode of administration (4 items)
B-cell non-Hodgkin lymphoma
  • ORPHA:171915
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:171
  • Rare hepatic disease
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
  • ORPHA:91378
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:735
  • Rare respiratory disease
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
Jarad and Sequeiros Symptom Score Questionnaire (Jarad Score)PRO Full
  • Adult
  • Cough,
  • sputum
  • breathlessness
  • fatigue
Cystic Fibrosis
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:2073
  • Rare sleep disorder
  • Not applicable
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
  • ORPHA:324
  • Rare inborn error of metabolism
Work Productivity and Activity Impairment Questionnaire: Uveitis, Version 2.0 (WPAI:Uveitis v2.0)PRO Basic
  • Adult
  • Work productivity (6 items)
Uveitis
  • ORPHA:98715
  • Rare systemic or rheumatologic disease
  • Rare ophthalmic disorder
Work Productivity and Activity Impairment Questionnaire: TTR Amyloidosis, Version 2.0 (WPAI:TTR Amyloidosis v2.0)PRO Basic
  • Adult
  • Work productivity
Hereditary ATTR amyloidosis
  • ORPHA:271861
  • Rare systemic or rheumatologic disease
  • Rare cardiac disease
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
  • ORPHA:584
  • Rare inborn error of metabolism
Work Productivity and Activity Impairment Questionnaire: Duchenne Muscular Dystrophy, Caregiver Version 2.0 (WPAI:DMD-CG)PRO Full
  • Caregiver
  • Work productivity
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
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
  • ORPHA:70482
  • Rare tumor
Esophago-Gastric surgery and Quality of Dietary life (EGQ-D)PRO Full
  • Adult
  • Eating behaviour (8 items)
Carcinoma of esophagus
  • ORPHA:70482
  • Rare tumor
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
  • ORPHA:98274
  • Tumor of hematopoietic and lymphoid tissues
Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment Questionnaire: Hemophilia Specific (WPAI+CIQ:HS)PRO Basic
  • Adult
  • Work productivity (9 items)
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:2467
  • Tumor of hematopoietic and lymphoid tissues
Work Productivity and Activity Impairment Questionnaire: Spinal Muscular Atrophy, for Caregivers, Version 2 (WPAI:SMA-CG)PRO Basic
  • Caregiver
  • Work Productivity
Spinal Muscular Atrophy
  • ORPHA:70
  • Rare neuromuscular disease
Treatment Outcome Score (TOS)PRO or ObsRO Basic
  • 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
  • ORPHA:91378
  • Rare systemic or rheumatologic disease
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
  • ORPHA:91378
  • Rare systemic or rheumatologic disease
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
  • ORPHA:580
  • Rare inborn error of metabolism
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
  • ORPHA:580
  • Rare inborn error of metabolism
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
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
Adult Sickle Cell Quality of Life Measurement Information System® - Pain (ASCQ-Me® - Pain)PRO Full
  • Adult
  • Pain (13 items)
Sickle cell anemia
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:232
  • Rare anemia
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
  • ORPHA:580
  • Rare inborn error of metabolism
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
  • ORPHA:448
  • Rare hemorrhagic disorder
Plexiform neurofibromas Quality of Life measure (PlexiQoL)PRO Full
  • Adult
  • Quality of life (18 items)
Neurofibromatosis type 1
  • ORPHA:636
  • Inherited cancer-predisposing syndrome
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:716
  • Rare inborn error of metabolism
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
  • ORPHA:98503
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
Autoinflammatory diseases Activity Index Diary (AIDAI)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • disease activity (12 items)
Mevalonate kinase deficiency
  • ORPHA:309025
  • Rare systemic or rheumatologic disease
  • Rare inborn error of metabolism
Autoinflammatory diseases Activity Index Diary (AIDAI)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • disease activity (12 items)
Familial Mediterranean fever
  • ORPHA:342
  • Rare systemic or rheumatologic disease
Autoinflammatory diseases Activity Index Diary (AIDAI)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • disease activity (12 items)
Cryopyrin-associated periodic syndrome
  • ORPHA:208650
  • Rare systemic or rheumatologic disease
Autoinflammatory diseases Activity Index Diary (AIDAI)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • disease activity (12 items)
Hereditary periodic fever syndrome
  • ORPHA:324924
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Pain Assessed Acromegaly Symptom Questionnaire (PASQ)PRO Basic
  • Adult
  • headache
  • excessive sweating
  • joint pain
  • fatigue
  • soft-tissue swelling
  • numbness or tingling of limbs
  • general physical condition
Acromegaly
  • ORPHA:963
  • Rare endocrine disease
  • ERN Endo
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
Quality of Life in Neurological Disorders Item Bank v1.0 - Depression (Neuro-QoL Item Bank v1.0 - Depression)PRO Basic
  • Adult
  • Depression
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Emotional and Behavioral dyscontrol
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Lower Extremity Function - Mobility
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Scale v1.0 - Communication (Neuro-QoL Scale v1.0 - Communication)PRO Basic
  • Adult
  • Communication
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:399
  • Rare neurodegenerative disease
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 Basic
  • Adult
  • Ability To Participate In Social Roles and Activities
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Bank v1.0 - Anxiety (Neuro-QoL Bank v1.0 - Anxiety)PRO Basic
  • Adult
  • Anxiety
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Ability to Participate in Social Roles and Activities
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Emotional and Behavioral dyscontrol
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Short Form v1.0 - Fatigue (Neuro-QoL Short Form v1.0 - Fatigue)PRO Basic
  • Adult
  • Fatigue
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Lower Extremity Function - Mobility
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Short Form v1.1 - Pediatric Depression (Neuro-QoL Short Form v1.1 - Pediatric Depression)PRO Basic
  • Pediatric
  • Adolescent
  • Depression
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Short Form v2.0 - Pediatric Cognitive Function (Neuro-QoL Short Form v2.0 - Pediatric Cognitive Function)PRO Basic
  • Pediatric
  • Adolescent
  • Cognitive function
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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 Basic
  • Adult
  • Satisfaction with Social Roles and Activities
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function)PRO Basic
  • Adult
  • Cognitive function
Huntington disease
  • ORPHA:399
  • Rare neurodegenerative disease
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function)PRO Basic
  • Adult
  • Cognitive function
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:98896
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:803
  • Rare neuromuscular disease
  • Rare epilepsy
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
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
  • ORPHA:399
  • Rare neurodegenerative disease
Haemophilia Quality of Life Questionnaire Index (Haemo-QoL Index)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Quality of life (8 items)
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
Childhood Arthritis Health Profile (CAHP)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Gross motor function
  • Fine motor function
  • Role activities
Juvenile idiopathic arthritis
  • ORPHA:92
  • Rare systemic or rheumatologic disease
Children's Arthritis Self-Efficacy (CASE)PRO Full
  • Pediatric
  • Adolescent
  • Activity (4 items)
  • Symptoms (4 items)
  • Emotions (3 items)
Juvenile idiopathic arthritis
  • ORPHA:92
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Atrial Fibrillation Severity Scale (AFSS)PRO Full
  • Adult
  • Aged
  • Frequency of episode
  • duration of episode
  • severity of episode
Familial atrial fibrillation
  • ORPHA:334
  • Rare cardiac rythm disease
Hemophilia Patient Satisfaction Scale (Hemo-Sat)PRO Full
  • Adult
  • Ease and convenience
  • Efficacy Burden
  • Specialist/nurses, Centre/Hospital
  • General satisfaction with your treatment
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:334
  • Rare cardiac rythm disease
HDQLIFE Scale v2.0 - Meaning and Purpose (HDQLIFE Scale v2.0 - Meaning and Purpose)PRO Full
  • Adult
  • Meaning and Purpose
Huntington disease
  • ORPHA:399
  • Rare neurodegenerative disease
EORTC Quality of Life Questionnaire - 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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
EORTC Quality of Life Questionnaire - 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
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
ABILHAND (ABILHAND)PRO Full
  • Adult
  • Aged
  • Hand and upper limb (dis)ability
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Validated Hemophilia Regimen Treatment Adherence Scale – On-Demand (VERITAS-PRN)PRO Basic
  • Adult
  • Treating
  • Timing
  • Dosing
  • Planning
  • Remembering
  • Communicating
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
Lupus Damage Index Questionnaire (LDIQ)PRO Basic
  • Adult
  • Eyes
  • Brain and Nerves
  • Kidneys
  • Lungs
  • Heart
  • Blood vessels
  • Stomach and bowels
  • Muscles and Bones
  • Skin
  • Menopause
  • Diabetes
  • Cancer
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:92
  • Rare systemic or rheumatologic disease
Raynaud’s Condition Score (RCS)PRO Full
  • Adult
  • Signs and symptoms (1 item)
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Rheumatology Attitudes Index (RAI)PRO Full
  • Adult
  • psychological construct of learned helplessness (15 items)
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Scleroderma Functional Score (FS)PRO or ObsRO Basic
  • Adult
  • functional ability (11 items)
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Myeloma Patient Outcome Scale (MyPOS)PRO Basic
  • Adult
  • Symptoms & function
  • Emotional response
  • Healthcare support
Multiple Myeloma
  • ORPHA:29073
  • Tumor of hematopoietic and lymphoid tissues
Sarcoidosis Assessment Tool (SAT)PRO Basic
  • Adult
  • Physical Functioning
  • Satisfaction with Roles and Activities
  • Pain Interference
  • Sleep Disturbance
  • Fatigue
  • Sarcoidosis–Lung Concerns
  • Sarcoidosis–Skin Concerns
  • Sarcoidosis–Skin Stigma
Sarcoidosis
  • ORPHA:797
  • Rare respiratory disease
St George’s Respiratory Questionnaire for Idiopathic Pulmonary Fibrosis (SGRQ-I)PRO Full
  • Adult
  • Symptoms
  • Activity
  • Impacts on daily life
Idiopathic pulmonary fibrosis
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:586
  • Rare respiratory disease
Arthritis Helplessness Index – 5 items (AHI-5 Helplessness)PRO Full
  • Adolescent
  • Adult
  • Helplessness
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Ergonomic Assessment Tool for Arthritis (EATA)PRO Full
  • Adult
  • Self-assessment (40 items maximum)
  • Consultation visit (59 items maximum)
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:92
  • Rare systemic or rheumatologic disease
Mouth Handicap in Systemic Sclerosis (MHISS)PRO Basic
  • Adult
  • Mouth Handicap
Systemic sclerosis
  • ORPHA:90291
  • Rare systemic or rheumatologic disease
Parent's Arthritis Self-Efficacy Scale (PASE)PRO Basic
  • Caregiver
  • parents' self-efficacy for managing children's arthritis-related symptoms
  • psychosocial health
Juvenile idiopathic arthritis
  • ORPHA:92
  • Rare systemic or rheumatologic disease
Patient Reported Outcome Spine Trauma (AOSpine PROST)PRO Full
  • Adult
  • Quality of life (19 items)
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
Evaluating Respiratory Symptoms™: Idiopathic Pulmonary Fibrosis (E-RS™: IPF)PRO Basic
  • Adult
  • Aged
  • Chest
  • Breathlessness
  • Cough
  • Sputum
Idiopathic pulmonary fibrosis
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:2032
  • Rare respiratory disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Systemic Lupus Erythematosus Impact Questionnaire (SIQ ©)PRO Full
  • Adult
  • Patients’ ability to make plans
  • work
  • physical functioning
  • social functioning
  • emotional functioning
Systemic Lupus Erythematosus
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:803
  • Rare neuromuscular disease
Plexiform Neurofibroma Pain Impact in Children & AdultsPRO Basic
  • Pediatric
  • Adolescent
  • Tumor-related pain intensity
  • pain interference
  • physical functioning
Neurofibromatosis type 1
  • ORPHA:636
  • Inherited cancer-predisposing syndrome
Self International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (Self ISTH BAT)PRO Basic
  • Adolescent
  • Adult
  • Aged
  • Bleeding
Von Willebrand disease
  • ORPHA:903
  • Rare hemorrhagic disorder
Pediatric Bleeding Questionnaire (PBQ)PRO Basic
  • Pediatric
  • Adolescent
  • Bleeding
Von Willebrand disease
  • ORPHA:903
  • Rare hemorrhagic disorder
Self-Administered Pediatric Bleeding Questionnaire (SPBQ)PRO Basic
  • Pediatric
  • Adolescent
  • Bleeding
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
Self-Administered Pediatric Bleeding Questionnaire (Self-PBQ)PRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Bleeding
Von Willebrand disease
  • ORPHA:903
  • Rare hemorrhagic disorder
School Age Self-Pediatric Bleeding Questionnaire (School Age Self-PBQ)PRO Basic
  • Pediatric
  • Bleeding
Von Willebrand disease
  • ORPHA:903
  • Rare hemorrhagic disorder
Cystic Fibrosis Abdomen-score (CFAbd-Score)PRO Basic
  • 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
  • ORPHA:586
  • Rare respiratory disease
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
  • ORPHA:98974
  • Rare ophthalmic disorder
Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q)PRO or ObsRO Basic
  • 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
  • ORPHA:98715
  • Rare systemic or rheumatologic disease
  • Rare ophthalmic disorder
Duchenne Muscular Dystrophy Quality of Life Measure - Self Report (DMD QoL-Self Report)PRO Basic
  • Pediatric
  • Physical
  • Autonomy
  • Social relationship
  • Identity
  • Feelings and emotions
Duchenne muscular dystrophy
  • ORPHA:98896
  • Rare neuromuscular disease
Therapy Administration Satisfaction Questionnaire (TASQ)PRO Full
  • Adult
  • patients’ perceptions and satisfaction with therapy subcutaneous or therapy intravenous (12 items)
Non-Hodgkin lymphoma
  • ORPHA:547
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:2073
  • Rare sleep disorder
  • Not applicable
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
  • ORPHA:2073
  • Rare sleep disorder
  • Not applicable
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
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:100088
  • Rare tumor
  • Rare endocrine disease
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
  • ORPHA:324
  • Rare inborn error of metabolism
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
German Spinal Cord Injury Survey (GerSCI)PRO Basic
  • Adult
  • No ifnormation
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
International Spinal Cord Injury Survey (InSCI)PRO Basic
  • Adult
  • No ifnormation
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
EORTC Quality of Life Questionnaire - Tyroid Cancer (EORTC QLQ-THY34)PRO Basic
  • 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
  • ORPHA:100088
  • Rare tumor
  • Rare endocrine disease
Atrial Fibrillation-6 (AF6)PRO Full
  • Adult
  • Symptoms (6 items)
Familial atrial fibrillation
  • ORPHA:334
  • Rare cardiac rythm disease
Goal Attainment Scaling for Haemophilia (GAS-Hēm)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Adult
  • No ifnormation
Hemophilia
  • ORPHA:448
  • Rare hemorrhagic disorder
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
  • ORPHA:334
  • Rare cardiac rythm disease
Dyspnea-ALS-Scale (DALS-15)PRO Full
  • Adult
  • Dyspnea (15 items)
Amyotrophic lateral sclerosis
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:803
  • Rare neuromuscular disease
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
  • ORPHA:586
  • Rare respiratory disease
Systemic Lupus Erythematosus Steroid Questionnaire (SSQ)PRO Basic
  • 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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:52688
  • Tumor of hematopoietic and lymphoid tissues
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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
Pediatric Quality of Life Inventory™ Spinal Cord Injury Module (PedsQL™ Spinal Cord Injury Module)PRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Adult
  • daily activities
  • mobility
  • bladder function
  • bowel function
  • pressure injury
  • pain interference
  • social participation
  • worry bladder bowel
  • worry social
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:586
  • Rare respiratory disease
Transition Readiness Assessment Questionnaire (TRAQ)PRO Basic
  • Pediatric
  • Adolescent
  • Adult
  • Appointment Keeping
  • Tracking Health Issues
  • Managing Medications
  • Talking With Providers
  • Managing Daily Activities
Cystic Fibrosis
  • ORPHA:586
  • Rare respiratory disease
Myasthenia Gravis Quality of Life 15-item Scale - Revised (MG-QoL15r)PRO Full
  • Adult
  • Quality of life (15 items)
Myasthenia gravis
  • ORPHA:589
  • Rare neuromuscular disease
Cleveland Global Quality of Life score (CGQL)PRO Basic
  • Adult
  • Current quality of life
  • current quality of health
  • current energy level
Familial adenomatous polyposis
  • ORPHA:733
  • Rare gastroenterologic disease
Hematology Patient Reported Symptom Screen (HPRSS)PRO Full
  • Adult
  • Aged
  • Fatigue
  • Pain
  • Quality of life
Amyloidosis
  • ORPHA:69
  • Rare systemic or rheumatologic disease
Cancer Treatment Survey (CaTS)PRO Full
  • Adult
  • Sensory/psychological concerns (14 items)
  • Procedural concerns (11 items)
Lymphoma
  • ORPHA:223735
  • Tumor of hematopoietic and lymphoid tissues
Understanding the impact of achondroplasia on quality of life (ACHQoL)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • No information
Achondroplasia
  • ORPHA:15
  • Rare systemic or rheumatologic disease
Achondroplasia Parent Experience Measure (APEM)PRO Full
  • Caregiver
  • Caretaking responsibilities (6 items)
  • Emotional well-being (6 items)
  • Family (2 items)
  • Work (1 item)
Achondroplasia
  • ORPHA:15
  • Rare systemic or rheumatologic disease
RICE Bladder Symptom Impact Scale - 6 items (RICE BSI-6)PRO Basic
  • Adult
  • Interest in Life
  • Feelings of Self-Worth
  • Social Life
  • Ability to Carry out Your Home Responsibilities
  • Energy Level
  • Moods
Interstitial cystitis
  • ORPHA:37202
  • Rare urogenital disease
Alfred Wellness Score (AWESCORE)PRO Basic
  • Adult
  • Respiratory
  • physical
  • nutritional
  • psychological
  • general health
Cystic Fibrosis
  • ORPHA:586
  • Rare respiratory disease
Multiple Myeloma Symptom and Impact Questionnaire (MySIm-Q)PRO Basic
  • Adult
  • Aged
  • Multiple Myeloma Symptoms (17 symptoms)
  • Impacts (9 impacts)
Multiple Myeloma
  • ORPHA:29073
  • Tumor of hematopoietic and lymphoid tissues
Patient Uncertainty Questionnaire-Rheumatology (PUQ-R)PRO Basic
  • 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
  • ORPHA:536
  • Rare systemic or rheumatologic disease
Spinal Cord Injury Functional Ambulation Profile (SCI-FAP)PRO Basic
  • 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
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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
  • ORPHA:334
  • Rare cardiac rythm disease
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
  • ORPHA:370334
  • Rare tumor
SCI Exercise Self-Efficacy Scale (ESES)PRO Basic
  • Adolescent
  • Exercise Self-Efficacy (10 items)
Spinal cord injury
  • ORPHA:90058
  • Rare neurologic disease
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare deafness
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
Functional Reading Independence Index (FRI Index)PRO Full
  • Adult
  • Aged
  • Functional reading independence (49 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
Multidimensional Assessment of Thymic States (MATHYS)PRO Full
  • Adult
  • Emotional reactivity
  • Cognition speed (thought processes)
  • Psychomotor function
  • Motivation
  • Sensory perception
Not a Rare Disease
  • Not a Rare Disease
  • Rare neurologic disease with psychiatric involvement
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
Performance Scales for Multiple Sclerosis (PS-MS)PRO Full
  • Adult
  • Mobility
  • Hand function
  • Vision
  • Fatigue
  • Cognitive symptom
  • Bladder / Bowel
  • Sensory symptom
  • Spasticity symptom
Not a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
Beck Depression Inventory® - Second Edition (BDI®-II)PRO Full
  • Adolescent
  • Adult
  • Cognitive-affective
  • Somatic
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Inventory of Depressive Symptomatology (IDS-SR and IDS-C)PRO Full
  • Adult
  • Vegetative symptoms
  • Cognitive changes
  • Mood disturbance
  • Endogeneous symptoms
  • Anxiety symptoms
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Iowa Fatigue Scale (IFS)PRO Full
  • Adult
  • Cognitive (4 items)
  • Fatigue (2 items)
  • Energy (3 items)
  • Productivity (2 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Personal Experiences Questionnaire (PEQ)PRO Full
  • Adult
  • Feelings for partner
  • Sexual responsivity
  • Sexual frequency
  • Libido
  • Vaginal distress/dyspareunia
  • Partner problems
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
Depression Anxiety Stress Scales Short Form (DASS-21)PRO Full
  • Adult
  • Depression (7 items)
  • Anxiety (7 items)
  • Stress (7 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
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
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Apathy Inventory (AI)PRO Full
  • Aged
  • Emotional Blunting
  • Lack of Initiative
  • Lack of Interest
Not a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
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
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
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Spinal Pain Independence Measure (SPIM)PRO Full
  • Adult
  • Mobility (5 items)
  • Activity in sitting and standing positions (3 items)
  • Activity indoors (4 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Daily Activities of Infants Scale (DAIS)PRO Full
  • Pediatric
  • Feeding
  • Bathing
  • Dressing
  • Carrying
  • Quiet play
  • Active play
  • Outings
  • Sleeping
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Instrumental Activities of Daily Living (IADL)PRO 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
Walking Impairment Questionnaire (WIQ)PRO Full
  • Adult
  • Symptoms (7 items)
  • Walking distance (7 items)
  • Walking speed (4 items)
  • Stair climbing (3 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare vascular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare respiratory disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare dementia
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Genetic obesity
  • ERN Endo
Dutch Eating Behavior Questionnaire - Child version (DEBQ-C)PRO Full
  • Pediatric
  • Emotional eating (7 items)
  • Restrained eating (7 items)
  • External eating (6 items)
Not a Rare Disease
  • Not a Rare Disease
  • Genetic obesity
  • ERN Endo
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Epworth Sleepiness Scale-Alternative Version (ESS-ALT)PRO Full
  • Adult
  • Activities during which a subject has a chance of falling asleep (8 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare diabetes mellitus
  • ERN Endo
Urinary Symptom Profile (USP)PRO Full
  • Adult
  • Stress urinary incontinence (SUI) (3 items)
  • Overactive bladder (OAB) (7 items)
  • Low stream (LS) (3 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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
Urogenital Distress Inventory - Short Form (UDI-6)PRO Full
  • Adult
  • Irritative Symptoms (2 items)
  • Obstructive/ Discomfort symptoms (2 items)
  • Stress Symptoms (2 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare pervasive developmental disorder
  • Rare intellectual disability
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Bowel Control Scale (BWCS)PRO Full
  • Adult
  • Bowel control
Not a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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
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
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
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Index of Sexual Life (ISL)PRO Full
  • Adult
  • Sexual life satisfaction (6 items)
  • Sexual drive (2 items)
  • General life satisfaction (2 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare neurologic disease with psychiatric involvement
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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
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
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
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare sleep disorder
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare cardiac disease
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
Physical Activity Scale for the Elderly (PASE)PRO Full
  • Adult
  • Aged
  • Occupational
  • household
  • leisure time activities
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare dementia
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
Endicott Work Productivity Scale (EWPS)PRO Full
  • Adult
  • work functioning
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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
Cytomegalovirus disease in patients with impaired cell mediated immunity deemed at risk
  • ORPHA:137698
  • Rare ophthalmic disorder
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare central nervous system and retinal vascular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare ophthalmic disorder
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
Acceptance and Action Questionnaire-Stigma (AAQ-S)PRO Full
  • Adult
  • Psychological inflexibility (11 items)
  • Psychological flexibility (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Ambivalence over Emotional Expression Questionnaire (AEQ)PRO Full
  • Adult
  • Ambivalence over Emotional Expression (28 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
Attention Star (Attention Star)PRO and ClinRO Basic
  • 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
Brief Fatigue Inventory (BFI)PRO Full
  • Adult
  • Fatigue (9 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare tumor
Big Five 10 (BFI-10)PRO Basic
  • Adult
  • Extraversion (2 items)
  • Agreeableness (2 items)
  • Conscientiousness (2 items)
  • Neuroticism (2 items)
  • Openness (2 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
Block Adult Physical Activity Screener - Year (Block PA_Adult04)PRO Basic
  • Adult
  • No information
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Block Kids 2-17 Screener (Block_K_Screen)PRO Basic
  • Adult
  • No information
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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
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
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 a Rare Disease
  • Not a Rare Disease
  • Rare developmental defect during embryogenesis
Child Occupational Self Assessment (COSA)PRO Basic
  • Pediatric
  • Activity (Competence scale)
  • how activities are important (Values scale)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Central Relationship Questionnaire (CRQ)PRO Basic
  • Adult
  • Wish
  • response from others
  • response of self
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Daily Hunger Questionnaire (DHQ)PRO Full
  • Adolescent
  • Adult
  • Hunger (3 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Eysenck Personality Questionnaire (EPQ)PRO Basic
  • Adult
  • Extraversion- Introversion
  • Neuroticism- Emotional Stability
  • Psychoticism/Socialisation
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Eysenck Personality Questionnaire Revised (EPQ-R)PRO Basic
  • Adult
  • Extraversion- Introversion
  • Neuroticism- Emotional Stability
  • Psychoticism/Socialisation
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Eysenck Personality Questionnaire Revised Short Form (EPQR-S)PRO Basic
  • Adult
  • Extraversion- Introversion
  • Neuroticism- Emotional Stability
  • Psychoticism/Socialisation
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Epworth Sleepiness Scale - Child Adolescent (ESS-CHAD)PRO or ObsRO Full
  • Pediatric
  • Adolescent
  • Daytime sleepiness
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
World Health Organization Health and Work Performance Questionnaire (HPQ)PRO Basic
  • Adult
  • Health and Work Performance
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Improved Health Assessment Questionnaire (Improved HAQ)PRO Full
  • Adult
  • Physial functioning
Not a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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
Karolinska Sleepiness Scale (KSS)PRO Full
  • Adult
  • Level of subjective sleepiness (1 item)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Lower Limb Functional Index (LLFI)PRO Full
  • Adult
  • Functioning (25 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
MD Anderson Symptom Inventory (MDASI)PRO Full
  • Adult
  • Symptom severity (13 items)
  • Symptom interference (6 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare tumor
Milford Epworth Sleepiness Scale (MESS)PRO Full
  • Adult
  • Sleep
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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
Neuro-QoL Scale v1.1 - Pediatric Lower ExtremityPRO Full
  • Adolescent
  • Lower extremity function (20 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
Neuro-QoL Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADLPRO Full
  • Adolescent
  • Upper extremity function (20 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare epilepsy
NIH Toolbox - Emotion - Social Relationships - Social DistressPRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Adult
  • Aged
  • Emotion
  • Social Relationships
  • Social Distress
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
NIH Toolbox - Emotion - Social Relationships - Social SupportPRO Basic
  • Pediatric
  • Adolescent
  • Adult
  • Aged
  • Emotion
  • Social Relationships
  • Social Support
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
NIH Toolbox - Friendship FF Age 18+ v2.0PRO Basic
  • Adult
  • Aged
  • Friendship
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
NIH Toolbox - Loneliness FF Ages 8-17 v2.0PRO Basic
  • Pediatric
  • Adolescent
  • Loneliness
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
NIH Toolbox - NIH Toolbox - Emotion - Social Relationships - CompanionshipPRO or ObsRO Basic
  • Pediatric
  • Adolescent
  • Adult
  • Aged
  • Emotion
  • Social Relationships
  • Companionship
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS - Pediatric Global Health Child-Report Form (PGH-7 Child-Report Form)PRO Full
  • Pediatric
  • Adolescent
  • General health: physical, mental, and social health (9 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Bank - Strength ImpactPRO Full
  • Pediatric
  • Adolescent
  • Physical capacity to perform functional activities of daily living (4 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Bank - Upper ExtremityPRO Full
  • Pediatric
  • Adolescent
  • Upper Extremity function (34 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Bank v1.0 - Physical ActivityPRO Full
  • Pediatric
  • Adolescent
  • Physical activity (10 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Bank v2.0 - MobilityPRO Full
  • Pediatric
  • Adolescent
  • Physical mobility (24 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v1.0 - Physical Activity 4aPRO Full
  • Pediatric
  • Adolescent
  • Physical activity (4 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v1.0 - Physical Activity 8aPRO Full
  • Pediatric
  • Adolescent
  • Physical activity (8 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v1.0 - Strength Impact 4aPRO Full
  • Pediatric
  • Adolescent
  • Physical capacity to perform functional activities of daily living (4 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v1.0 - Strength Impact 8aPRO Full
  • Pediatric
  • Adolescent
  • Physical capacity to perform functional activities of daily living (8 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v2.0 – Mobility 8aPRO Full
  • Pediatric
  • Adolescent
  • Physical mobility (8 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
PROMIS Pediatric Short Form v2.0 – Upper Extremity 8aPRO Basic
  • Pediatric
  • Adolescent
  • Upper Extremity function (8 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Patient-Specific Functional Scale (PSFS)PRO Basic
  • Adult
  • Functioning (5 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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
Quantity and Quality Method (QQ Method )PRO Full
  • Adult
  • Work functioning (2 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Split Week Self-Assessment of Sleep Survey (SASS-Y)PRO Basic
  • Adult
  • Sleep (18 items)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Stanford Sleepiness Scale (SSS)PRO Full
  • Adult
  • Perceived level of sleepiness (1 item)
Not a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Time of Day Sleepiness Scale (ToDSS)PRO Basic
  • Adult
  • Sleepiness across the day (8 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare sleep disorder
  • Not applicable
Upper Limb Functional Index (ULFI)PRO Full
  • Adult
  • Quality of life and upper extremity dysfunction (10 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
Upper Limb Functional Index-10 (ULFI-10)PRO Full
  • Adult
  • Quality of life and upper extremity dysfunction (25 items)
Not a Rare Disease
  • Not a Rare Disease
  • Rare neuromuscular disease
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
Work Role Functioning Questionnaire 2.0 (WRFQ 2.0)PRO Basic
  • 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
Work Role Functioning Questionnaire-10 2.0 (WRFQ-10 2.0 )PRO Basic
  • Adult
  • Work functioning (5 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
Work Role Functioning Questionnaire-5 2.0 (WRFQ-5 2.0 )PRO Basic
  • Adult
  • Work functioning (10 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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 a Rare Disease
  • Not a Rare Disease
  • Rare renal disease
  • ERN ERKNet
Screen for Caregiver Burden (SCB)PRO Full
  • Caregiver
  • Subjective and Objective burden (25 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare neurodegenerative disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare dementia
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
Burden of Treatment Questionnaire (TBQ)PRO Full
  • Adult
  • Aged
  • Burden of treatment (15 items)
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
EORTC Quality of Life Questionnaire - 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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
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 a Rare Disease
  • Not a Rare Disease
  • Rare neurologic disease with psychiatric involvement
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Genetic obesity
  • ERN Endo
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 a Rare Disease
  • Not a Rare Disease
  • Rare renal disease
  • ERN ERKNet
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 a Rare Disease
  • Not a Rare Disease
  • Rare renal disease
  • ERN ERKNet
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 a Rare Disease
  • Not a Rare Disease
  • Rare urogenital disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare respiratory disease
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 -> Anorectal malformation
  • Not applicable
  • Not applicable
  • Not applicable
EORTC Quality of life Questionnaire - 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 a Rare Disease
  • Not a Rare Disease
  • Rare pancreatic tumor
Patient-Reported Outcomes Measurement Information System® - 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 a Rare Disease
  • Not a Rare Disease
  • Rare cardiac disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare inflammatory bowel disease
Asthma Symptom Utility Index (ASUI)PRO Full
  • Adult
  • Cough
  • wheeze
  • shortness of breath
  • awakening at night
Not a Rare Disease
  • Not a Rare Disease
  • Rare respiratory disease
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
Health and Activity Limitation Index (HALex)PRO Full
  • Adult
  • Perceived Health
  • Activity Limitation
Not applicable
  • Not applicable
  • Not applicable
  • Not applicable
McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR)PRO Full
  • Adult
  • Physical functioning
  • Social functioning
  •  Emotional functioning
Not a Rare Disease
  • Not a Rare Disease
  • Rare systemic or rheumatologic disease
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
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 a Rare Disease
  • Not a Rare Disease
  • Not applicable
  • Not applicable
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 a Rare Disease
  • Not a Rare Disease
  • Rare tumor
Family Environment Scale (FES)PRO Full
  • Pediatric
  • Caregiver
  • 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
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)