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™.
PCOM/PROM Name | Type | PROQOLID™ | Age | Domains | Disease (OrphaName) | OrphaCode | Group of Diseases | ERNs | PROQOLID™ Link |
---|---|---|---|---|---|---|---|---|---|
Adult Sickle Cell Quality of Life Measurement Information System® (ASCQ-Me®) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
EORTC - Chronic Myeloid Leukaemia (EORTC QLQ-CML24) | PRO | Basic |
|
| Non-Hodgkin lymphoma |
|
| ||
EORTC - Non Hodgkin Lymphoma Low Grade Module (EORTC- QLQ-NHL-LG20) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
Haemophilia Quality of Life Questionnaire for Children (Haemo-QOL) | PRO or ObsRO | Full |
|
| Hemophilia |
|
| ||
Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro) | PRO or ObsRO | Basic |
|
| Hemophilia |
|
| ||
Assessment of caregiver experience with neuromuscular disease (ACEND) | PRO | No |
|
| Neuromuscular disease |
|
| ||
Achondroplasia Personal Life Experience Scale (APLES) | PRO | No |
|
| Achondroplasia |
|
| ||
Acromegaly Quality of Life questionnaire (AcroQoL) | PRO | Full |
|
| Acromegaly |
|
|
| |
Activities of Daily Vision & Daily Task Performance Questionnaire (ADVS) | PRO | Basic |
|
| Not a Rare Disease |
|
| ||
Activities Scale for Kids©-Performance (ASK©-Performance) | PRO or ObsRO | Full |
|
| Cystic Fibrosis |
|
| ||
Activities-Specific Balance Confidence Scale (ABC scale) | PRO | Full |
|
| Not applicable |
|
|
| |
Activity Limitations Questionnaire (ACTIVLIM) | PRO or ObsRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Activity Limitations Questionnaire (ACTIVLIM) | PRO or ObsRO | Full |
|
| Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy |
|
| ||
Activity Limitations Questionnaire (ACTIVLIM) | PRO or ObsRO | Full |
|
| Myotonic dystrophy |
|
| ||
Activity Limitations Questionnaire (ACTIVLIM) | PRO or ObsRO | Full |
|
| Neuromuscular disease |
|
| ||
Addison's disease-specific quality of llife questionnaire (AddiQoL) | PRO | No |
|
| Addison disease |
|
|
| |
Adult Self Report (ASR) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Amyotrophic Lateral Sclerosis Survey (ALS Survey) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Amyotrophic Lateral Sclerosis Survey (ALS Survey) | PRO | Full |
|
| Spinal Muscular Atrophy |
|
| ||
Amyotrophic Lateral Sclerosis Survey (ALS Survey) | PRO | Full |
|
| Motor neuron disease |
|
| ||
Arthritis Educational Needs Assessment Tool (ENAT) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Autoimmune Bullous Disease Quality of Life Questionnaire (ABQOL) | PRO | Full |
|
| Autoimmune bullous skin disease |
|
| ||
Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Bath Ankylosing Spondylitis Functional Index (BASFI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Behavior Rating Inventory of Executive Function® (BRIEF®) | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
Behçet's disease Quality of Life (BD-QoL) | PRO | Full |
|
| Behçet disease |
|
| ||
Beliefs about Medicines Questionnaire (BMQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Bladder Exstrophy Epispadias Complex Quality of Life Questionnaire (BEEC-QOL ) | PRO | No |
|
| Exstrophy-epispadias complex |
|
| ||
Borg Dyspnea Scale (Borg CR10 Scale®) | PRO | Full |
|
| Not applicable |
|
|
| |
BREAST Q | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Brief Illness Perception Questionnaire (Brief IPQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Canadian Hemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT) | PRO or ObsRO | Basic |
|
| Hemophilia |
|
| ||
Charcot-Marie-Tooth Health Index (CMT-HI) | PRO | No |
|
| Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy |
|
| ||
Child Health Questionnaire (CHQ) | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
Childhood Health Assessment Questionnaire (CHAQ) | PRO or ObsRO | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
Children's Dermatology Life Quality Index (CDLQI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
CLEFT-Questionnaire (CLEFT-Q) | PRO | Full |
|
| Cleft lip/palate |
|
|
| |
Cochin 17-item Scleroderma Functional scale (CSF-17) | PRO | No |
|
| Systemic sclerosis |
|
| ||
Cushing's disease quality of life instrument (CushingQoL) | PRO | Full |
|
| Cushing Syndrome |
|
|
| |
Cystic Fibrosis Quality of Life (CFQoL) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Cystic Fibrosis Questionnaire (CFQ) | PRO or ObsRO | Full |
|
| Cystic Fibrosis |
|
| ||
Cystic Fibrosis Questionnaire-Revised (CFQ-R) | PRO or ObsRO | Full |
|
| Cystic Fibrosis |
|
| ||
Der Familien-Belastungs-Fragebogen (FABEL) - Impact on family scale | PRO | No |
|
| Not a Rare Disease |
|
|
| |
Dermatology Life Quality Index (DLQI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Disability of the Arm Shoulder and Hand (DASH) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Disease Specific Module for Epilepsy (EM) - Proxy version (DISABKIDS EM) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Duchenne muscular dystrophy Upper Limb patient-reported outcome measure (DMD Upper Limb PROM) | PRO | No |
|
| Duchenne muscular dystrophy |
|
| ||
DUX25 | PRO | No |
|
| No information |
|
|
| |
EORTC - Breast Cancer Module (EORTC QLQ-BR23) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
EORTC - Core Questionnaire (EORTC QLQ-C30) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
EORTC - Hodgkin Lymphoma Module (EORTC QLQ-HL27) | PRO | Full |
|
| Hodgkin lymphoma |
|
| ||
EORTC - Multiple Myeloma Module (EORTC QLQ-MY20) | PRO | Full |
|
| Multiple Myeloma |
|
| ||
Epilepsy and Learning Disabilities Quality of Life (ELDQOL) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Epworth Sleepiness Scale (ESS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
EQ-5D 3L, 5L, Youth | PRO | Full |
|
| Not applicable |
|
|
| |
Esophageal-Atresia-Quality-of-life Questionnaire (EA-QOL) | PRO | No |
|
| Esophageal atresia |
|
| ||
European League Against Rheumatism (EULAR) Sjögren syndrome Patient-Reported Index (ESSPRI) | PRO | Full |
|
| Primary Sjögren syndrome |
|
| ||
Everyday Task Questionnaire | PRO | No |
|
| No information |
|
|
| |
FACE-Q | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
FACE-Q Craniofacial Module | PRO | No |
|
| Not a Rare Disease |
|
|
| |
FACIT-F | PRO | Full |
|
| Not a Rare Disease |
|
| ||
FACIT-Fatigue | PRO | Full |
|
| Not a Rare Disease |
|
| ||
FACT - Bone Marrow Transplantation (FACT-BMT) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Family Dermatology Life Quality Index (FDLQI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Fatigue Severity Scale (FSS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Fecal Incontinence Quality of Life scale (FIQL) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Female Sexual Function Index (FSFI) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Fertigkeitenskala Münster Heidelberg (FMH) - Munster Heidelberg Abilities Scale | PRO | No |
|
| No information |
|
|
| |
Fragebogen zum Körperbild/Body Image Questionnaire (FKB-20 / BIQ-20) | PRO | Full |
|
| Not applicable |
|
|
| |
Functional Disability Inventory (FDI) | PRO or ObsRO | Basic |
|
| Not applicable |
|
|
| |
Functional Vision Questionnaire for Children and Young People (FVQ-CYP) | PRO | Basic |
|
| Not a Rare Disease |
|
| ||
General Self-Efficacy Scale (GSE) | PRO | Basic |
|
| Not applicable |
|
|
| |
Generalized Anxiety Disorder - 7 (GAD-7) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Genetic Counseling Outcome Scale (GCOS-24) | PRO | Basic |
|
| Not applicable |
|
|
| |
Genetic Syndromes Stressors Scale (GSSS) | PRO or ObsRO | No |
|
| Rare genetic developmental defect during embryogenesis |
|
| ||
GNE myopathy- Functional activity scale (GNEM-FAS) | PRO | No |
|
| GNE myopathy |
|
| ||
Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL) | PRO | Full |
|
| Hemophilia |
|
| ||
Hand scleroDerma lived Experience (HAnDE) scale | PRO | No |
|
| Systemic sclerosis |
|
| ||
Health Assessment Questionnaire (HAQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Health Assessment Questionnaire Disability Index (HAQ-DI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Hidradenitis suppurativa Physical global assesment (HS-PGA) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Hospital Anxiety and depression scale (HADS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Hypospadias-Specific Health-Related Quality of Life (HRQoL) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Impact of Vision Impairment–Very Low Vision Questionnaire (IVI-VLV) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Impact on participation and autonomy questionnaire (IPA) | PRO | No |
|
| Spinal cord injury |
|
|
| |
Impact of NF1 on Quality Of Life questionnaire (INF1-QOL) | PRO | No |
|
| Neurofibromatosis type 1 |
|
| ||
Independent Mobility Questionnaire (IMQ) | PRO | No |
|
| Retinitis Pigmentosa |
|
| ||
Individualized Neuromuscular Quality of Life Questionnaire (INQoL) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Inflammatory Rasch-built Overall Disability Scale (I-RODS) | PRO | No |
|
| Chronic inflammatory demyelinating polyneuropathy |
|
| ||
Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB) | ClinRO | No |
|
| Epidermolysis bullosa simplex |
|
| ||
International Consultation on Incontinence Questionnaire - Urinary Incontinence Short Form (ICIQ-UI Short Form) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
International Prostate Symptom Score (I-PSS) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (ISTH BAT) | PRO | Basic |
|
| Rare hemorrhagic disorder |
|
| ||
Interstitial Cystitis Symptom Index and Problem Index (ICSI-ICPI) | PRO | Full |
|
| Interstitial cystitis |
|
| ||
Juvenile arthritis Multidimensional Activity Score (JAMAR) | PRO | no |
|
| Juvenile idiopathic arthritis |
|
| ||
KIDSCREEN | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
King’s Brief Interstitial Lung Disease Questionnaire (K-BILD) | PRO | Basic |
|
| Interstitial lung disease |
|
| ||
King's Health Questionnaire (KHQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
KLIK (using LAST thermometer, quality of life questionnaires etc) | PRO | No |
|
| No information |
|
|
| |
Leicester Cough Questionnaire (LCQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Living with Pulmonary Fibrosis (L-PF) Impacts Questionnaire (L-PF Impacts) | PRO | Full |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Lupus Impact Tracker (LIT) | PRO | NO |
|
| Systemic Lupus Erythematosus |
|
| ||
Lupus Patient-Reported Outcome tool (LupusPRO) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Lupus Quality Of Life (LupusQoL) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Lymphoedema Functioning, Disability and Health Questionnaire for Lower Limb Lymphoedema (Lymph-ICF-LL) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Medication Adherence Rating Scale (MARS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Multidimensional Fatigue Inventory (MFI) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Myasthenia Gravis Activities of Daily Living Profile (MG-ADL) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Myasthenia Gravis Impairment Index (MGII) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Myasthenia Gravis Quality of Life 15-item Scale (MG-QoL15) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
MyeloProliferative Neoplasm - 10 (MPN-10) | PRO | No |
|
| Myeloproliferative neoplasm |
|
| ||
Myositis Activities Profile (MAP) | PRO | Basic |
|
| Polymyositis |
|
| ||
Myositis Activities Profile (MAP) | PRO | Basic |
|
| Dermatomyositis |
|
| ||
Myotonia behavioural scale (MBS) | PRO | No |
|
| Congenital myotonia |
|
| ||
National Eye Institute Visual Function Questionnaire-25 (NEI-VFQ-25) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Night Vision Questionnaires (NVQ-10) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Neurofibromatosis 2 Impact on Quality of life (NFTI-QoL) | PRO | No |
|
| Neurofibromatosis type 2 |
|
| ||
Nontransfusion-dependent thalassemia - Patient-reported outcome (NTDT-PRO) | PRO | No |
|
| Beta-thalassemia |
|
| ||
Patient Acceptable Symptom State (PASS) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Patient Health Questionnaire (PHQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Patient-Reported Outcomes – Common Terminology Criteria for Adverse Events (PRO-CTCAE) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Patient Activity of Daily Living scale for patients with Amyotrophic Lateral Sclerosis (PADL-ALS) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Pediatric Charcot-Marie-Tooth Disease Quality of Life Outcome Measure (pCMT-QoL) | PRO | No |
|
| Charcot-Marie-Tooth disease/Hereditary motor and sensory neuropathy |
|
| ||
Pediatric Outcome Data Collecting Instrument (PODCI) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Pediatric quality of life inventory (PedsQL) 4.0 Generic Core Scales | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
Pediatric Quality of Life Inventory™ Cancer Module | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
PedsQL epilepsy module | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
PedsQL multidimensional fatigue scale | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
|
| |
PedsQL Neurofibromatosis Type 1 Module | PRO or ObsRO | Basic |
|
| Neurofibromatosis type 1 |
|
| ||
Pediatric Quality of Life Inventory™ 3.0 Neuromuscular Module (PedsQL™ 3.0 Neuromuscular Module) | PRO or ObsRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Pediatric Quality of Life Inventory™ 3.0 Neuromuscular Module (PedsQL™ 3.0 Neuromuscular Module) | PRO or ObsRO | Full |
|
| Spinal Muscular Atrophy |
|
| ||
PedsQL TM 1.0 Stem Cell Transplant Module | PRO or ObsRO | Full |
|
| Graft versus host disease |
|
| ||
PedsQL TM 3.0 Transplant Module | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
PedsQL TM Infant Scales | PRO or ObsRO | Basic |
|
| Not applicable |
|
|
| |
Pelvic pain and Urgency/Frequency symptom scale (PUF) | PRO | Full |
|
| Interstitial cystitis |
|
| ||
Penn Acoustic Neuroma Quality-of-Life scale (PANQOL) | PRO | Basic |
|
| Vestibular schwannoma |
|
| ||
Illness Cognition Questionnaire (ICQ) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Polycystic Liver Disease Questionnaire (PLD-Q) | PRO | Basic |
|
| Isolated polycystic liver disease |
|
| ||
Perceived Social Support Questionnaire (F-SozU K-6) | PRO | no |
|
| Not applicable |
|
|
| |
Primary Biliary Cholangitis Questionnaire (PBC-40) | PRO | No |
|
| Primary biliary cholangitis |
|
| ||
PROMIS Fatigue 7a | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
PROMIS Global Health | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pain interference 6a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS physical function (8b V2.0) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
PROMIS Sleep Disturbance | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
PROMIS Pediatric Profile-25 v2.0 | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS-29 | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS-57 | PRO | Full |
|
| Not applicable |
|
|
| |
Pyruvate Kinase Deficiency Diary (PKDD) | PRO | Basic |
|
| Hemolytic anemia due to red cell pyruvate kinase deficiency |
|
| ||
Pyruvate Kinase Deficiency Impact Assessment (PKDIA) | PRO | Basic |
|
| Hemolytic anemia due to red cell pyruvate kinase deficiency |
|
| ||
QUAlity of Life Assessment in Spina bifida for Teenagers, Childern and Adults (QUALAS-T, QUALAS-C, QUALAS-A) | PRO or ObsRO | No |
|
| Isolated spina bifida |
|
| ||
Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) | PRO | Full |
|
| Pituitary deficiency |
|
|
| |
Quality of life in epidermolysis bullosa questionnaire (QOLEB) | PRO | No |
|
| Epidermolysis bullosa simplex |
|
| ||
Quality of Life Questionnaire for patients with Aplastic Anemia and/or Paroxysmal Nocturnal Hemoglobinuria (QLQ-AA/PNH) | PRO or ObsRO | Full |
|
| Paroxysmal Nocturnal Hemoglobinuria |
|
| ||
Quick Systemic Lupus Activity Questionnaire (Q-SLAQ) | PRO | No |
|
| Systemic Lupus Erythematosus |
|
| ||
Rasch-built Overall Disability Scale (R-ODS) | PRO | Full |
|
| Chronic inflammatory demyelinating polyneuropathy |
|
| ||
Rasch-built Overall Disability Scale (R-ODS) | PRO | Full |
|
| Guillain-Barré syndrome |
|
| ||
Rasch-built Pompe-specific Activity scale (R-PAct) | PRO | Full |
|
| Glycogen storage disease due to acid maltase deficiency |
|
| ||
Rintala Score | PRO and ClinRO | No |
|
| Anorectal malformation |
|
| ||
Satisfaction with Appearance Scale (SWAP) | PRO | No |
|
| Not a Rare Disease |
|
|
| |
Scleroderma Health Assessment Questionnaire (SHAQ) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Scleroderma Skin Patient Reported Outcome (SSPRO) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Self Assessment of Communication (SAC) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Self-Efficacy for Managing Chronic Disease (SEMCD) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
SF 36 | PRO | Full |
|
| Not applicable |
|
|
| |
Sickle Cell Pain Diary | PRO | Basic |
|
| Sickle cell anemia |
|
| ||
Simple Measure of Impact of Lupus Erythematosus in Youngsters©-Child Report (SMILEY©-Child Report) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Sino-Nasal Outcome Test (SNOT-20) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Short Inflammatory Bowel Disease Questionnaire (SIBDQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Somatic Symptom Disorder - B Criteria Scale (SSD-12) | PRO | no |
|
| Not applicable |
|
|
| |
Somatic symptom scale-8 (SSS-8) | PRO | no |
|
| Not applicable |
|
|
| |
Specific Thalassemia Quality of Life Instrument (STQOLI) | PRO | No |
|
| Beta-thalassemia |
|
| ||
Spinal Muscular Atrophy Independence Scale - Upper Limb Module (SMAIS-ULM) | PRO or ObsRO | Full |
|
| Spinal Muscular Atrophy |
|
| ||
St George’s Respiratory Questionnaire (SGRQ) | PRO | Full |
|
| Sarcoidosis |
|
| ||
Strengths and Difficulties Questionnaire (SDQ) | PRO or ObsRO | No |
|
| Not applicable |
|
|
| |
Systemic Lupus Activity Questionnaire (SLAQ) | PRO | Basic |
|
| Systemic Lupus Erythematosus |
|
| ||
Systemic Lupus Erythematosus Quality of Life (L-QoL) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Systemic Lupus Erythematosus-Specific Quality-Of-Life scale (SLEQOL) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
EULAR Systemic Sclerosis Impact of Disease (ScleroID) | PRO | Basic |
|
| Systemic sclerosis |
|
| ||
Systemic Sclerosis Quality of Life Scale (SSc-QoL) | PRO | Basic |
|
| Systemic sclerosis |
|
| ||
Systemic Sclerosis Questionnaire (SySQ) | PRO | No |
|
| Systemic sclerosis |
|
| ||
Treatment Expectation Questionnaire (TEX-Q) | PRO | No |
|
| Not applicable |
|
|
| |
Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) | PRO | Full |
|
| Autoimmune bullous skin disease |
|
| ||
Treatment Satisfaction Questionnaire for Medication - 9 items (TSQM-9) | PRO | Full |
|
| Not applicable |
|
|
| |
University of California, Los Angeles Scleroderma Clinical Trial Consortium Gastrointestinal Tract Instrument (UCLA SCTC GIT) | PRO | Basic |
|
| Scleroderma |
|
| ||
The University of California, San Diego Shortness of Breath Questionnaire (SOBQ) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Upper Extremity Functional Index (UEFI) | PRO | Basic |
|
| Not a Rare Disease |
|
| ||
Urethral stricture surgery patient-reported outcome measure (USS PROM) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Urethral Stricture Symptoms and Impact Measure (USSIM) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Vision Impairment in Low Luminance Questionnaire (VILLQ) | PRO | No |
|
| Not a Rare Disease |
|
| ||
Vision Related Activities of Daily Living (V-ADL) | PRO | No |
|
| No information |
|
| ||
Vision-related Quality of Life Questionnaire for Children and Young People (VQoL-CYP) | PRO | Basic |
|
| Not a Rare Disease |
|
| ||
Visual Function Index (VF-14) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Viswanathan 10 questionnaire | PRO | No |
|
| Not a Rare Disease |
|
| ||
Work Ability Index (WAI) | PRO | No |
|
| Not applicable |
|
|
| |
Work Environment Impact Scale (WEIS) | PRO | No |
|
| Not applicable |
|
|
| |
Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI:GH 2.0) | PRO | Full |
|
| Not applicable |
|
|
| |
Patient Activation Measure (PAM) | PRO | Basic |
|
| Not applicable |
|
|
| |
Health Education Impact Questionnaire (heiQ™) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Pediatric Quality of Life Inventory™ Cancer Module (PedsQL™ Cancer Module) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
SF-12 | PRO | Full |
|
| Not applicable |
|
|
| |
Pediatric Quality of Life Inventory™ Neurofibromatosis Type 1 Module (PedsQL™ Neurofibromatosis Type 1 Module) | PRO | Full |
|
| Neurofibromatosis type 1 |
|
| ||
Myasthenia Gravis Composite (MGC) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Ocular Treatment Index (OTI) | PRO | No |
|
| Rare disorder with lens opacification |
|
| ||
Multidimensional Assessment of Fatigue (MAF) | PRO | No |
|
| Not a Rare Disease |
|
| ||
EORTC Quality of Life Questionnaire - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17) | PRO | Full |
|
| Hodgkin lymphoma |
|
| ||
EORTC Quality of Life Questionnaire - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17) | PRO | Full |
|
| B-cell chronic lymphocytic leukemia |
|
| ||
EORTC Quality of Life Questionnaire - Chronic Lymphocytic Leukaemia Module (EORTC QLQ-CLL17) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
Brief Pain Inventory - Short form (BPI-SF) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Columbia-Suicide Severity Rating Scale (C-SSRS) | PRO and ClinRO | Full |
|
| Not a Rare Disease |
|
|
| |
Pulmonary Arterial Hypertension-Symptoms and Impact Questionnaire (PAH-SYMPACT) | PRO | Full |
|
| Pulmonary arterial hypertension |
|
| ||
Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Minnesota Living with Heart Failure Questionnaire (MLHF) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
emPHasis-10 | PRO | Full |
|
| Not a Rare Disease |
|
| ||
World Health Organization Quality of Life assessment instrument (WHOQOL-BREF) | PRO or ObsRO | Basic |
|
| Not applicable |
|
|
| |
Facioscapulohumeral muscular dystrophy-Health Index (FSHD-Health Index) | PRO | No |
|
| Facioscapulohumeral dystrophy |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 - Fatigue (Neuro-QoL Item Bank v1.0 - Fatigue) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Living with Idiopathic Pulmonary Fibrosis (L-IPF) Impacts Questionnaire (L-IPF Impacts) | PRO | Full |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Living with Idiopathic Pulmonary Fibrosis (L-IPF) Symptoms Questionnaire (L-IPF Symptoms) | PRO | Full |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Juvenile Arthritis Disease Activity Score (JADAS-10/71/27) | PRO or ObsRO and ClinRO and Biomarker | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
ANCA-Associated Vasculitis Patient-Reported Outcomes (AAV-PRO) | PRO | Full |
|
| Anti-neutrophil cytoplasmic antibody-associated vasculitis |
|
| ||
MyeloProliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-SAF TSS) | PRO | Full |
|
| Myeloproliferative neoplasm |
|
| ||
Pulmonary Arterial Hypertension Quality of Life (PAHQoL) | PRO | Full |
|
| Pulmonary arterial hypertension |
|
| ||
Amyotrophic Lateral Sclerosis Assessment Scales - 40 items (ALSAQ-40) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Oswestry Disability Index (ODI) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Quality of Life in Occupational Therapy (Qual-OT) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Life Satisfaction Index for Adolescents (LSIA) | PRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Myasthenia Gravis Questionnaire (MGQ) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Ferrans and Powers Quality of Life Index (QLI) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
QUALIVEEN (QUALIVEEN) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Hemophilia-specific health-related quality of life questionnaire (A36 Hemofilia-QoL®) | PRO | Full |
|
| Hemophilia |
|
| ||
NERN eUROGENic Bowel Dysfunction score (NBD score) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Quality of Life E (QOL-E) | PRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Systemic Lupus Erythematosus Quality of Life Questionnaire (LQoL) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Haemophilia age group-specific Quality of life questionnaire (QUAL HEMO) | PRO or ObsRO | Full |
|
| Hemophilia |
|
| ||
Perception of Anticoagulant Treatment Questionnaire (PACT-Q) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Quality of Life questionnaire for Patients with Atrial Fibrillation (AF-QOL18) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Huntington's Disease health-related Quality of Life questionnaire (HDQoL©) | PRO or ObsRO | Full |
|
| Huntington disease |
|
| ||
Oral Health Related Quality of Life for patients with Hypodontia (OHRQoL Hypodontia) | PRO | Basic |
|
| Anodontia |
|
| ||
Myelofibrosis Symptom Assessment Form (MFSAF) | PRO | Full |
|
| Myeloproliferative neoplasm |
|
| ||
Hemophilia Well-Being Index (HWBI) | PRO | Full |
|
| Hemophilia |
|
| ||
Self-administered Computerized version of the BDI-TDI (SAC BDI-TDI) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Pediatric Quality of Life Inventory™ Sickle Cell Disease Module (PedsQL™ Sickle Cell Disease Module) | PRO or ObsRO | Full |
|
| Sickle cell anemia |
|
| ||
Pediatric Quality of Life Inventory™ Duchenne Muscular Dystrophy Module (PedsQL™ Duchenne Muscular Dystrophy Module) | PRO or ObsRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Center for Neurologic Study-Lability Scale (CNS-LS) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Phenylketonuria impact and treatment Quality Of Life Questionnaire (PKU-QOL) | PRO or ObsRO | Full |
|
| Phenylketonuria |
|
| ||
Cystic Fibrosis Respiratory Symptom Diary (CFRSD) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
National Comprehensive Cancer Network Functional Assessment of CancerTherapy - Lymphoma Symptom lndex-18 (NFLymSI-18) | PRO | Full |
|
| Lymphoma |
|
| ||
Functional Assessment of Cancer Therapy - Lymphoma (FACT-Lym) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) | PRO | Basic |
|
| Acromegaly |
|
|
| |
Daily Health Assessment Forms (DHAFs) | PRO | Basic |
|
| Cryopyrin-associated periodic syndrome |
|
| ||
Work Productivity and Activity Impairment: Lupus (WPAI:Lupus) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Systemic lupus erythematosus Symptom Checklist (SSC) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Body Concealment Scale for Scleroderma (BCSS) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
HemoLatin-QoL (HemoLatin-QoL) | PRO | Full |
|
| Hemophilia |
|
| ||
Mastocytosis Quality of Life Questionnaire (MC-QoL) | PRO | Full |
|
| Systemic mastocytosis |
|
| ||
Angioedema Activity Score (AAS) | PRO | Full |
|
| Hereditary angioedema |
|
| ||
Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) | PRO or ObsRO | Full |
|
| Pleural mesothelioma |
|
| ||
Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale (ADPKD-PDS) | PRO | Full |
|
| Autosomal dominant polycystic kidney disease |
|
|
| |
Autosomal Dominant Polycystic Kidney Disease Impact Scale (ADPKD-IS) | PRO | Full |
|
| Autosomal dominant polycystic kidney disease |
|
|
| |
Autosomal Dominant Polycystic Kidney Disease Urinary Impact Scale (ADPKD-UIS) | PRO | Full |
|
| Autosomal dominant polycystic kidney disease |
|
|
| |
Bladder Pain/Interstitial Cystitis Symptom Score (BPIC-SS) | PRO | Full |
|
| Interstitial cystitis |
|
| ||
Patient Perception and Preference for Haemophilia Treatment (HaemoPREF) | PRO | Full |
|
| Hemophilia |
|
| ||
Craig Handicap Assessment and Reporting Technique and Craig Handicap Assessment and Reporting Technique - Short form (CHART and CHART-SF) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
Atrial Fibrillation Impact Questionnaire (AFImpact) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Functional Assessment of Cancer Therapy-Esophageal (FACT-E) | PRO | Full |
|
| Carcinoma of esophagus |
|
| ||
Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
MPS Health Assessment Questionnaire (MPS-HAQ) | PRO or ObsRO | Full |
|
| Mucopolysaccharidosis |
|
| ||
Quality of Life in Neurological Disorders (Neuro-QOL) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Quality of Life in Neurological Disorders (Neuro-QOL) | PRO or ObsRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders (Neuro-QOL) | PRO or ObsRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF) | PRO or ObsRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders - Short forms (Neuro-QOL SF) | PRO or ObsRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Spinal Cord Injury – Quality of Life (SCI-QOL) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
HD-PRO-TRIAD™ (HD-PRO-TRIAD™) | PRO | Full |
|
| Huntington disease |
|
| ||
Hemophila-specific Quality of Life Questionnaire for Adults (Haemo-QoL-A) | PRO | Full |
|
| Hemophilia |
|
| ||
Haemo-SYM (Haemo-SYM) | PRO | Full |
|
| Hemophilia |
|
| ||
Family Burden Ichthyosis questionnaire (FBI) | PRO | Full |
|
| Ichthyosis |
|
| ||
Hand Disability In Systemic Sclerosis - Digital Ulcers (HDISS-DU) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Spinal Cord Injury – Quality of Life Short form (SCI-QOL SF) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Pediatric version of the Quality of Life in Neurological Disorders (Pediatric Neuro-QOL) | PRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Pediatric version of the Quality of Life in Neurological Disorders Short Form (Pediatric Neuro-QOL SF) | PRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Mycosis Fungoides / Sezary Syndrome - Cutaneous T-cell lymphoma Quality of life (CTCL-QoL) | PRO | Full |
|
| Sézary syndrome |
|
| ||
Huntington's Disease health-related Quality of LIFE (HDQLIFE) | PRO | Full |
|
| Huntington disease |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® (ASCQ-Me SF®) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
M.D. Anderson Symptom Inventory - Acute Myeloid Leukemia / Myelodysplastic Syndromes (MDASI-AML/MDS) | PRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
M.D. Anderson Symptom Inventory - Acute Myeloid Leukemia / Myelodysplastic Syndromes (MDASI-AML/MDS) | PRO | Full |
|
| Acute myeloid leukemia |
|
| ||
Quality of Life in Myelodysplasia Scale (QUALMS) | PRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Functional Assessment of Cancer Therapy - Multiple Myeloma (FACT-MM) | PRO | Full |
|
| Multiple Myeloma |
|
| ||
MD Anderson Symptom Inventory - Chronic Graft-Versus-Host Disease module (MDASI-CGVHD) | PRO | Full |
|
| Graft versus host disease |
|
| ||
MD Anderson Symptom Inventory - Gastrointestinal Stromal Tumor Module (MDASI-GIST) | PRO | Full |
|
| Gastrointestinal stromal tumor |
|
| ||
MD Anderson Symptom Inventory - Lung Cancer Module (MDASI-LC) | PRO | Full |
|
| Small cell lung cancer |
|
| ||
MD Anderson Symptom Inventory - Multiple Myeloma Module (MDASI-MM) | PRO | Full |
|
| Multiple Myeloma |
|
| ||
MD Anderson Symptom Inventory - Thyroid Cancer Module (MDASI-Thy) | PRO | Full |
|
| Thyroid carcinoma |
|
| ||
Patient Preference Questionnaire (PPQ) | PRO | Full |
|
| Follicular lymphoma |
|
| ||
Patient Preference Questionnaire (PPQ) | PRO | Full |
|
| B-cell non-Hodgkin lymphoma |
|
| ||
Rituximab Administration Satisfaction Questionnaire (RASQ) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
Primary Sclerosing Cholangitis - PRO (PSC PRO) | PRO | Full |
|
| Primary sclerosing cholangitis |
|
| ||
Hereditary Angioedema Patient Reported Outcomes (HAE PRO) | PRO | Full |
|
| Hereditary angioedema |
|
| ||
Spinal Cord Injury - Functional Index (SCI-FI) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
King's Sarcoidosis Questionnaire (KSQ) | PRO | Full |
|
| Sarcoidosis |
|
| ||
Spinal Cord Injury–Functional Index short forms (SCI-FI SFs) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Spinal Cord Injury - Functional Index/Assistive Technology (SCI-FI/AT) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Spinal Cord Injury - Functional Index/Assistive Technology Short Forms (SCI-FI/AT SFs) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Jarad and Sequeiros Symptom Score Questionnaire (Jarad Score) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Narcolepsy Severity Scale (NSS) | PRO | Full |
|
| Narcolepsy |
|
|
| |
Fabry-specific Pediatric Health and Pain Questionnaire (FPHPQ) | PRO or ObsRO | Full |
|
| Fabry disease |
|
| ||
Work Productivity and Activity Impairment Questionnaire: Uveitis, Version 2.0 (WPAI:Uveitis v2.0) | PRO | Basic |
|
| Uveitis |
|
| ||
Work Productivity and Activity Impairment Questionnaire: TTR Amyloidosis, Version 2.0 (WPAI:TTR Amyloidosis v2.0) | PRO | Basic |
|
| Hereditary ATTR amyloidosis |
|
| ||
Work Productivity and Activity Impairment Questionnaire: Mucopolysaccharidosis type VII, Version 2.0 (WPAI:MPS-VII-Caregiver v2.0) | PRO | Full |
|
| Mucopolysaccharidosis type 7 |
|
| ||
Work Productivity and Activity Impairment Questionnaire: Duchenne Muscular Dystrophy, Caregiver Version 2.0 (WPAI:DMD-CG) | PRO | Full |
|
| Duchenne muscular dystrophy |
|
| ||
Esophagus and Stomach Surgery Symptom Scale (ES4) | PRO | Full |
|
| Carcinoma of esophagus |
|
| ||
Esophago-Gastric surgery and Quality of Dietary life (EGQ-D) | PRO | Full |
|
| Carcinoma of esophagus |
|
| ||
MyeloProliferative Neoplasm Symptom Assessment Form (MPN-SAF) | PRO | Full |
|
| Myeloproliferative neoplasm |
|
| ||
Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment Questionnaire: Hemophilia Specific (WPAI+CIQ:HS) | PRO | Basic |
|
| Hemophilia |
|
| ||
Patient Reported Outcomes, Burdens and Experiences (PROBE) | PRO | Full |
|
| Hemophilia |
|
| ||
Hemophilia Activities List (HAL) | PRO | Full |
|
| Hemophilia |
|
| ||
Paediatric Haemophilia Activities List (PedHAL) | PRO or ObsRO | Full |
|
| Hemophilia |
|
| ||
Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF) | PRO | Full |
|
| Systemic mastocytosis |
|
| ||
Work Productivity and Activity Impairment Questionnaire: Spinal Muscular Atrophy, for Caregivers, Version 2 (WPAI:SMA-CG) | PRO | Basic |
|
| Spinal Muscular Atrophy |
|
| ||
Treatment Outcome Score (TOS) | PRO or ObsRO | Basic |
|
| Hereditary angioedema |
|
| ||
Mean Symptom Complex Severity score (MSCS) | PRO or ObsRO | Basic |
|
| Hereditary angioedema |
|
| ||
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Patient version (HS-FOCUS Patient version) | PRO | Full |
|
| Mucopolysaccharidosis type 2 |
|
| ||
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Shortened version - Patient version (Shortened HS-FOCUS - Patient version) | PRO | Full |
|
| Mucopolysaccharidosis type 2 |
|
| ||
Patient Experiences and Satisfaction with Medications (PESaM) | PRO | Full |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Cognitive Impact (ASCQ-Me® - Cognitive Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Emotional Impact (ASCQ-Me® - Emotional Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Pain (ASCQ-Me® - Pain) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Sleep Impact (ASCQ-Me® - Sleep Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Social Functioning Impact (ASCQ-Me® - Social Functioning Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System® - Stiffness Impact (ASCQ-Me® - Stiffness Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Emotional Impact (ASCQ-Me SF® - Emotional Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Pain Impact (ASCQ-Me SF® - Pain Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Pain Episodes (ASCQ-Me SF® - Pain Episodes) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Sleep Impact (ASCQ-Me SF® - Sleep Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Social Functioning Impact (ASCQ-Me SF® - Social Functioning Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Adult Sickle Cell Quality of Life Measurement Information System Short Form® - Stiffness Impact (ASCQ-Me SF® - Stiffness Impact) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Sickle Cell Disease Medical History Checklist (SCD-MHC) | PRO | Full |
|
| Sickle cell anemia |
|
| ||
Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale - Shortened version - Parent version (Shortened HS-FOCUS - Parent version) | PRO | Full |
|
| Mucopolysaccharidosis type 2 |
|
| ||
Inhibitor-Specific Quality of Life with Aspects of Caregiver Burden (Adapted INHIB-QoL) | PRO | Full |
|
| Hemophilia |
|
| ||
Plexiform neurofibromas Quality of Life measure (PlexiQoL) | PRO | Full |
|
| Neurofibromatosis type 1 |
|
| ||
Spinal Cord Injury Computer Adaptive Test (SCI-CAT) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Profile of Mood States - Phenylketonuria (PKU-POMS) | PRO | Full |
|
| Phenylketonuria |
|
| ||
Neurological Fatigue Index - Motor Neurone Disease (NFI-MND) | PRO | Full |
|
| Motor neuron 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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Autoinflammatory diseases Activity Index Diary (AIDAI) | PRO or ObsRO | Full |
|
| Mevalonate kinase deficiency |
|
| ||
Autoinflammatory diseases Activity Index Diary (AIDAI) | PRO or ObsRO | Full |
|
| Familial Mediterranean fever |
|
|
| |
Autoinflammatory diseases Activity Index Diary (AIDAI) | PRO or ObsRO | Full |
|
| Cryopyrin-associated periodic syndrome |
|
| ||
Autoinflammatory diseases Activity Index Diary (AIDAI) | PRO or ObsRO | Full |
|
| Hereditary periodic fever syndrome |
|
| ||
Brief Index of Lupus Damage (BILD) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Pain Assessed Acromegaly Symptom Questionnaire (PASQ) | PRO | Basic |
|
| Acromegaly |
|
|
| |
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Chorea (Neuro-QoL Bank v2.0 - HDQLIFE - Chorea) | PRO | Full |
|
| Huntington 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 |
|
| Huntington disease |
|
| ||
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Speech Difficulties (Neuro-QoL Bank v2.0 - HDQLIFE - Speech Difficulties) | PRO | Full |
|
| Huntington disease |
|
| ||
Quality of Life in Neurological Disorders Bank v2.0 - HDQLIFE - Swallowing Difficulties (Neuro-QoL Bank v2.0 - HDQLIFE - Swallowing Difficulties) | PRO | Full |
|
| Huntington disease |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 - Depression (Neuro-QoL Item Bank v1.0 - Depression) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Stigma (Neuro-QoL Item Bank v1.0 - Pediatric Stigma) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 – Stigma (Neuro-QoL Item Bank v1.0 - Stigma) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Item Bank v2.0 - Cognitive Function (Neuro-QoL Item Bank v2.0 - Cognitive Function) | PRO | Basic |
|
| Huntington disease |
|
| ||
Quality of Life in Neurological Disorders Item Bank v2.0 - Cognitive Function (Neuro-QoL Item Bank v2.0 - Cognitive Function) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Item Bank v2.0 - Pediatric Cognitive Function (Neuro-QoL Item Bank v2.0 - Pediatric Cognitive Function) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Item Bank v2.1 - Pediatric Fatigue (Neuro-QoL Item Bank v2.1 - Pediatric Fatigue) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Scale v1.0 - Communication (Neuro-QoL Scale v1.0 - Communication) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Huntington 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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Bank v1.0 - Anxiety (Neuro-QoL Bank v1.0 - Anxiety) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Anxiety (Neuro-QoL Short Form v1.0 - Anxiety) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Depression (Neuro-QoL Short Form v1.0 - Depression) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Fatigue (Neuro-QoL Short Form v1.0 - Fatigue) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Anxiety (Neuro-QoL Item Bank v1.0 - Pediatric Anxiety) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Anxiety (Neuro-QoL Short Form v1.0 - Pediatric Anxiety) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.1 – Pediatric Depression (Neuro-QoL Item Bank v1.1 - Pediatric Depression) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.1 - Pediatric Depression (Neuro-QoL Short Form v1.1 - Pediatric Depression) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Item Bank v1.0 – Pediatric Anger (Neuro-QoL Short Form v1.0 - Pediatric Anger) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Short Form v2.1 - Pediatric Fatigue (Neuro-QoL Short Form v2.1 - Pediatric Fatigue) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Short Form v2.0 - Pediatric Cognitive Function (Neuro-QoL Short Form v2.0 - Pediatric Cognitive Function) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function) | PRO | Basic |
|
| Huntington disease |
|
| ||
Quality of Life in Neurological Disorders Short Form v2.0 - Cognitive Function (Neuro-QoL Short Form v2.0 - Cognitive Function) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Pain (Neuro-QoL Short Form v1.0 - Pediatric Pain) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
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 |
|
| Duchenne muscular dystrophy |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Pediatric Stigma (Neuro-QoL Short Form v1.0 - Pediatric Stigma) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Stigma (Neuro-QoL Short Form v1.0 - Stigma) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v1.0 - Sleep Disturbance (Neuro-QoL Short Form v1.0 - Sleep Disturbance) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
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 |
|
| Amyotrophic lateral sclerosis |
|
| ||
Quality of Life in Neurological Disorders Short Form v2.0 - HDQLIFE - Chorea 6a (Neuro-QoL Short Form v2.0 - HDQLIFE - Chorea 6a) | PRO | Full |
|
| Huntington 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 |
|
| Huntington 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 |
|
| Huntington 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 |
|
| Huntington disease |
|
| ||
Haemophilia Quality of Life Questionnaire Index (Haemo-QoL Index) | PRO or ObsRO | Full |
|
| Hemophilia |
|
| ||
Childhood Arthritis Health Profile (CAHP) | PRO or ObsRO | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
Children's Arthritis Self-Efficacy (CASE) | PRO | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
Duruöz Hand Index (DHI) | PRO or ObsRO | Full |
|
| Systemic sclerosis |
|
| ||
Atrial Fibrillation Severity Scale (AFSS) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Hemophilia Patient Satisfaction Scale (Hemo-Sat) | PRO | Full |
|
| Hemophilia |
|
| ||
Patient Perspective of Arrhythmia Questionnaire (PPAQ) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
HDQLIFE Scale v2.0 - Meaning and Purpose (HDQLIFE Scale v2.0 - Meaning and Purpose) | PRO | Full |
|
| Huntington disease |
|
| ||
EORTC Quality of Life Questionnaire - Non Hodgkin Lymphoma High Grade Module (EORTC QLQ-NHL-HG29) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
EORTC Quality of Life Questionnaire - Non Hodgkin Lymphoma Low Grade Module (EORTC- QLQ-NHL-LG20) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
ABILHAND (ABILHAND) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Validated Hemophilia Regimen Treatment Adherence Scale – On-Demand (VERITAS-PRN) | PRO | Basic |
|
| Hemophilia |
|
| ||
Amyotrophic Lateral Sclerosis Specific Quality of Life (ALSSQOL) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Amyotrophic Lateral Sclerosis Specific Quality of Life-Revised (ALSSQOL-R) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Lupus Damage Index Questionnaire (LDIQ) | PRO | Basic |
|
| Systemic Lupus Erythematosus |
|
| ||
Child's Version-Pediatric Rheumatology Quality of Life Scale (Child's Version-PRQL) | PRO | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
Raynaud’s Condition Score (RCS) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Rheumatology Attitudes Index (RAI) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Scleroderma Assessment Questionnaire (SAQ) | PRO | Full |
|
| Systemic sclerosis |
|
| ||
Scleroderma Functional Score (FS) | PRO or ObsRO | Basic |
|
| Systemic sclerosis |
|
| ||
Myeloma Patient Outcome Scale (MyPOS) | PRO | Basic |
|
| Multiple Myeloma |
|
| ||
Sarcoidosis Assessment Tool (SAT) | PRO | Basic |
|
| Sarcoidosis |
|
| ||
St George’s Respiratory Questionnaire for Idiopathic Pulmonary Fibrosis (SGRQ-I) | PRO | Full |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Systemic Lupus Erythematosus Questionnaire on Family Role Functioning (SLE-FAMILY) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Systemic Lupus Erythematosus Needs Questionnaire (SLENQ) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Disability and Impact Profile (DIP) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Covid-19 Peritraumatic Distress Index- Cystic Fibrosis (CPDI-CF) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Arthritis Helplessness Index – 5 items (AHI-5 Helplessness) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Ergonomic Assessment Tool for Arthritis (EATA) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Childhood Health Assessment Questionnaire - Child's Version (CHAQ-CV) | PRO | Full |
|
| Juvenile idiopathic arthritis |
|
| ||
Mouth Handicap in Systemic Sclerosis (MHISS) | PRO | Basic |
|
| Systemic sclerosis |
|
| ||
Parent's Arthritis Self-Efficacy Scale (PASE) | PRO | Basic |
|
| Juvenile idiopathic arthritis |
|
| ||
Patient Reported Outcome Spine Trauma (AOSpine PROST) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
Evaluating Respiratory Symptoms™: Idiopathic Pulmonary Fibrosis (E-RS™: IPF) | PRO | Basic |
|
| Idiopathic pulmonary fibrosis |
|
| ||
A Tool to Assess Quality of Life in Idiopathic Pulmonary Fibrosis (ATAQ-IPF) | PRO | Basic |
|
| Idiopathic pulmonary fibrosis |
|
| ||
Lupus Satisfaction Questionnaire (LSQ©) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Lupus Symptom Severity Diary (LSSD©) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Systemic Lupus Erythematosus Impact Questionnaire (SIQ ©) | PRO | Full |
|
| Systemic Lupus Erythematosus |
|
| ||
Amyotrophic Lateral Sclerosis Assessment Scales - 5 items (ALSAQ-5) | PRO | Basic |
|
| Amyotrophic lateral sclerosis |
|
| ||
Plexiform Neurofibroma Pain Impact in Children & Adults | PRO | Basic |
|
| Neurofibromatosis type 1 |
|
| ||
Self International Society on Thrombosis and Haemostasis/Scientific and Standardization Committee Bleeding Assessment Tool (Self ISTH BAT) | PRO | Basic |
|
| Von Willebrand disease |
|
| ||
Pediatric Bleeding Questionnaire (PBQ) | PRO | Basic |
|
| Von Willebrand disease |
|
| ||
Self-Administered Pediatric Bleeding Questionnaire (SPBQ) | PRO | Basic |
|
| Hemophilia |
|
| ||
Self-Administered Pediatric Bleeding Questionnaire (Self-PBQ) | PRO or ObsRO | Basic |
|
| Von Willebrand disease |
|
| ||
School Age Self-Pediatric Bleeding Questionnaire (School Age Self-PBQ) | PRO | Basic |
|
| Von Willebrand disease |
|
| ||
Cystic Fibrosis Abdomen-score (CFAbd-Score) | PRO | Basic |
|
| Cystic Fibrosis |
|
| ||
Visual Function and Corneal Health Status (V-FUCHS) | PRO | Basic |
|
| Fuchs endothelial corneal dystrophy |
|
| ||
Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q) | PRO or ObsRO | Basic |
|
| Uveitis |
|
| ||
Duchenne Muscular Dystrophy Quality of Life Measure - Self Report (DMD QoL-Self Report) | PRO | Basic |
|
| Duchenne muscular dystrophy |
|
| ||
Therapy Administration Satisfaction Questionnaire (TASQ) | PRO | Full |
|
| Non-Hodgkin lymphoma |
|
| ||
Pediatric Narcolepsy Severity Scale (NSS-P) | PRO | Full |
|
| Narcolepsy |
|
|
| |
Narcolepsy Severity Scale for Clinical Trials (NSS-CT) | PRO | Full |
|
| Narcolepsy |
|
|
| |
Satisfaction Questionnaire with Intravenous or Subcutaneous Hemophilia Injection (SQ-ISHI) | PRO | Full |
|
| Hemophilia |
|
| ||
THYroid CANcer-Quality of Life (THYCA-QoL) | PRO | Full |
|
| Thyroid carcinoma |
|
| ||
Fabry Disease PRO (FD-PRO) | PRO | Full |
|
| Fabry disease |
|
| ||
Spinal Cord Injury Secondary Conditions Scale (SCI-SCS) | PRO | Full |
|
| Spinal cord injury |
|
|
| |
German Spinal Cord Injury Survey (GerSCI) | PRO | Basic |
|
| Spinal cord injury |
|
|
| |
International Spinal Cord Injury Survey (InSCI) | PRO | Basic |
|
| Spinal cord injury |
|
|
| |
EORTC Quality of Life Questionnaire - Tyroid Cancer (EORTC QLQ-THY34) | PRO | Basic |
|
| Thyroid carcinoma |
|
| ||
Atrial Fibrillation-6 (AF6) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Goal Attainment Scaling for Haemophilia (GAS-Hēm) | PRO or ObsRO | Full |
|
| Hemophilia |
|
| ||
Satisfaction with oral anticoagulants in patients with non-valvular atrial fibrillation (SAFUCA) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
Dyspnea-ALS-Scale (DALS-15) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Amyotrophic Lateral Sclerosis Specific Quality of Life-Short Form (ALSSQOL-SF) | PRO | Full |
|
| Amyotrophic lateral sclerosis |
|
| ||
Cystic Fibrosis - Impact Questionnaire (CF-IQ) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Systemic Lupus Erythematosus Steroid Questionnaire (SSQ) | PRO | Basic |
|
| Systemic Lupus Erythematosus |
|
| ||
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 |
|
| Myelodysplastic syndrome |
|
| ||
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 |
|
| Spinal cord injury |
|
|
| |
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 |
|
| Myelodysplastic syndrome |
|
| ||
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 |
|
| Spinal cord injury |
|
|
| |
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 |
|
| Myelodysplastic syndrome |
|
| ||
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 |
|
| Spinal cord injury |
|
|
| |
Assessment of Life Habits - General Long Form - 3.0 (LIFE-H General Long Form - 3.0) | PRO or ObsRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Assessment of Life Habits - General Long Form - 3.0 (LIFE-H General Long Form - 3.0) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
Assessment of Life Habits - General Short Form - 3.0 (LIFE-H General Short Form - 3.0) | PRO or ObsRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Assessment of Life Habits - General Short Form - 3.0 (LIFE-H General Short Form - 3.0) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
Assessment of Life Habits - General Short Version - 16 items - 3.0 (LIFE-H General Short Version - 16 items - 3.0) | PRO or ObsRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Assessment of Life Habits - General Short Version - 16 items - 3.0 (LIFE-H General Short Version - 16 items - 3.0) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
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 |
|
| Myelodysplastic syndrome |
|
| ||
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 |
|
| Spinal cord injury |
|
|
| |
Assessment of Life Habits - For children from 5 to 13 years - 4.0 (LIFE-H - 5-13 - 4.0) | PRO or ObsRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Assessment of Life Habits - For children from 5 to 13 years - 4.0 (LIFE-H - 5-13 - 4.0) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
Assessment of Life Habits - For Teenagers, Adults and Seniors - 4.0 (LIFE-H - For Teenagers, Adults and Seniors - 4.0) | PRO or ObsRO | Full |
|
| Myelodysplastic syndrome |
|
| ||
Assessment of Life Habits - For Teenagers, Adults and Seniors - 4.0 (LIFE-H - For Teenagers, Adults and Seniors - 4.0) | PRO or ObsRO | Full |
|
| Spinal cord injury |
|
|
| |
Pediatric Quality of Life Inventory™ Spinal Cord Injury Module (PedsQL™ Spinal Cord Injury Module) | PRO or ObsRO | Basic |
|
| Spinal cord injury |
|
|
| |
Disease Specific Module for Cystic Fibrosis (CFM) - Self-reported version (DISABKIDS CFM - SR version) | PRO | Full |
|
| Cystic Fibrosis |
|
| ||
Transition Readiness Assessment Questionnaire (TRAQ) | PRO | Basic |
|
| Cystic Fibrosis |
|
| ||
Myasthenia Gravis Quality of Life 15-item Scale - Revised (MG-QoL15r) | PRO | Full |
|
| Myasthenia gravis |
|
| ||
Cleveland Global Quality of Life score (CGQL) | PRO | Basic |
|
| Familial adenomatous polyposis |
|
| ||
Hematology Patient Reported Symptom Screen (HPRSS) | PRO | Full |
|
| Amyloidosis |
|
| ||
Cancer Treatment Survey (CaTS) | PRO | Full |
|
| Lymphoma |
|
| ||
Understanding the impact of achondroplasia on quality of life (ACHQoL) | PRO or ObsRO | Full |
|
| Achondroplasia |
|
| ||
Achondroplasia Parent Experience Measure (APEM) | PRO | Full |
|
| Achondroplasia |
|
| ||
RICE Bladder Symptom Impact Scale - 6 items (RICE BSI-6) | PRO | Basic |
|
| Interstitial cystitis |
|
| ||
Alfred Wellness Score (AWESCORE) | PRO | Basic |
|
| Cystic Fibrosis |
|
| ||
Multiple Myeloma Symptom and Impact Questionnaire (MySIm-Q) | PRO | Basic |
|
| Multiple Myeloma |
|
| ||
Patient Uncertainty Questionnaire-Rheumatology (PUQ-R) | PRO | Basic |
|
| Systemic Lupus Erythematosus |
|
| ||
Spinal Cord Injury Functional Ambulation Profile (SCI-FAP) | PRO | Basic |
|
| Spinal cord injury |
|
|
| |
Atrial Fibrillation Symptoms Questionnaire™ (AFSymp™) | PRO | Full |
|
| Familial atrial fibrillation |
|
| ||
DUX Questionnaire for lower extremity bone tumor (Bt-DUX) | PRO | Full |
|
| Extraskeletal Ewing sarcoma |
|
| ||
SCI Exercise Self-Efficacy Scale (ESES) | PRO | Basic |
|
| Spinal cord injury |
|
|
| |
Glasgow Hearing Aid Benefit Profile (GHABP) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Conners 3 Self Report Full Length (Conners 3-SR) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Quality of Life Inventory® (QOLI®) | PRO | Full |
|
| Not applicable |
|
|
| |
Multiple Ability Self-Report Questionnaire (MASQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Functional Reading Independence Index (FRI Index) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
York Incontinence Perceptions Scale (YIPS) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Multidimensional Assessment of Thymic States (MATHYS) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Functional Assessment of Cancer Therapy - Cognitive function issues (FACT-Cog) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Performance Scales for Multiple Sclerosis (PS-MS) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Beck Depression Inventory® - Second Edition (BDI®-II) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Inventory of Depressive Symptomatology (IDS-SR and IDS-C) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Iowa Fatigue Scale (IFS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Sexual Function Questionnaire (SFQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Abbreviated Sexual Function Questionnaire (ASFQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Cognitive and Affective Mindfulness Scale - Revised 12-item version (CAMS-R 12-item version) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Cognitive and Affective Mindfulness Scale - Revised 10-item version (CAMS-R 10-item version) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Personal Experiences Questionnaire (PEQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Health and Work Questionnaire (HWQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Depression Anxiety Stress Scales Short Form (DASS-21) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Depression Anxiety Stress Scales (DASS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Perceived Deficits Questionnaire - Depression (PDQ-D) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Perceived Deficits Questionnaire (PDQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Behavior Rating Inventory of Executive Function® - Self-Report Version (BRIEF®-SR) | PRO | Full |
|
| Not applicable |
|
|
| |
Behavior Rating Inventory of Executive Function® - Adult Version (BRIEF®-A) | PRO | Full |
|
| Not applicable |
|
|
| |
Functional Assessment of Multiple Sclerosis: Trial Outcome Index (FAMS-TOI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Fallowfield's Sexual Activity Questionnaire (FSAQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Brief Index of Sexual Functioning for Women (BISF-W) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Apathy Inventory (AI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Medical Outcomes Study Sleep scale (MOS Sleep) | PRO | Full |
|
| Not applicable |
|
|
| |
Family Environment Scale (FES) | PRO | Full |
|
| Not applicable |
|
|
| |
Pain Response to Activity and Positioning (PRAP) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Spinal Pain Independence Measure (SPIM) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Arizona Sexual Experience Scale (ASEX) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Daily Activities of Infants Scale (DAIS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Instrumental Activities of Daily Living (IADL) | PRO | Full |
|
| Not applicable |
|
|
| |
Walking Impairment Questionnaire (WIQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Pulmonary Functional Status & Dyspnea Questionnaire-Modified (PFSDQ-M) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Profile of Mood States - Short Form (POMS-SF) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Profile of Mood States (POMS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
International Consultation on Incontinence Questionnaire-Female Lower Urinary Tract Symptoms - Long Form (ICIQ-FLUTS LF) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
International Consultation on Incontinence Questionnaire Paediatric Lower Urinary Tract Symptoms (ICIQ-CLUTS) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Weekly Record of Behavior (WRB) | PRO and ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Fatigue Symptom Inventory (FSI) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Dutch Eating Behavior Questionnaire (DEBQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Dutch Eating Behavior Questionnaire - Child version (DEBQ-C) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Primary Care Evaluation of Mental Disorders (Clinician-administered version) (PRIME-MD (Clinician-administered version)) | PRO and ClinRO | Full |
|
| Not a Rare Disease |
|
|
| |
Epworth Sleepiness Scale-Alternative Version (ESS-ALT) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Incontinence Symptom Index-Pediatric (ISI-P) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Male Urogenital Distress Inventory (MUDI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Well-Being Questionnaire (W-BQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Urinary Symptom Profile (USP) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Parenting Stress Index, Fourth Edition (PSI?-4) | PRO | Full |
|
| Not applicable |
|
|
| |
Urogenital Distress Inventory - Short Form (UDI-6) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Social Responsiveness Scale (SRS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Behavior and Symptom Identification Scale® (BASIS-32®) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Bowel Control Scale (BWCS) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
International Consultation on Incontinence Questionnaire Anal Incontinence Symptoms and Quality of Life Module (ICIQ-B) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Illness Perception Questionnaire (IPQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Revised Illness Perception Questionnaire (IPQ-R) | PRO | Full |
|
| Not applicable |
|
|
| |
Psychological General Well-Being Index (PGWBI) | PRO | Full |
|
| Not applicable |
|
|
| |
Psychosocial Impact of Assistive Device Scale (PIADS) | PRO | Full |
|
| Not applicable |
|
|
| |
Low Luminance Questionnaire (LLQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Sexual Function Index (SFI) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Health Assessment Questionnaire for the Spondyloarthropaties (HAQ-S) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Jenkins Activity Survey (JAS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Index of Sexual Life (ISL) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Medical Outcomes Study (MOS) Social Support Survey (MOS-SSS) | PRO | Full |
|
| Not applicable |
|
|
| |
Life Functioning Questionnaire (LFQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Pictured Child's Quality of Life Self Questionnaire (AUQUEI) | PRO | Full |
|
| Not applicable |
|
|
| |
Quality of Life Radiation Therapy Instrument (QOL-RTI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Family System Test (FAST) | PRO and ClinRO | Full |
|
| Not applicable |
|
|
| |
Tableau d'Evaluation Assistée de la Qualité de Vie (TEAQV) | PRO and ClinRO | Full |
|
| Not applicable |
|
|
| |
Pediatric Quality of Life Inventory? Family Impact Module (PedsQL? Family Impact Module) | PRO and ObsRO | Full |
|
| Not applicable |
|
|
| |
Self-Esteem and Relationship Questionnaire (SEAR©) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Functional Outcomes of Sleep Questionnaire Short Version (FOSQ-10) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Duke Activity Status Index (DASI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Health Related Productivity Questionnaire (HRPQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Physical Activity Scale for the Elderly (PASE) | PRO | Full |
|
| Not applicable |
|
|
| |
Mayers' Lifestyle Questionnaires (1), (2) and (3) (Mayers' LSQ (1), (2) and (3)) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Weekly Record of Behavior - short form (WRB-S) | PRO and ObsRO | Full |
|
| Not a Rare Disease |
|
| ||
Health and Labour Questionnaire (HLQ) | PRO | Basic |
|
| Not applicable |
|
|
| |
Endicott Work Productivity Scale (EWPS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
iMTA Productivity Cost Questionnaire (iPCQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Impact of Cancer Version 2 (IOC v2) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Quality of Life with Eye Disease (CMV-EYE) | PRO | Full |
|
| Cytomegalovirus disease in patients with impaired cell mediated immunity deemed at risk |
|
| ||
NIH Toolbox Sensation Battery (NIH Toolbox Sensation Battery) | PRO and PerfO | Basic |
|
| Not applicable |
|
|
| |
Nottingham Extended Activities of Daily Living (NEADL) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Near Activity Visual Questionnaire (NAVQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
16-dimensional health-related quality of life measure (16D© ) | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
Acceptance and Action Questionnaire-Stigma (AAQ-S) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Ambivalence over Emotional Expression Questionnaire (AEQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Adolescent Life Change Events Scale (ALCES) | PRO | Full |
|
| Not applicable |
|
|
| |
Attention Star (Attention Star) | PRO and ClinRO | Basic |
|
| Not applicable |
|
|
| |
Brief Fatigue Inventory (BFI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Big Five 10 (BFI-10) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Bond-Lader VAS (Mood Rating Scale) (BL-VAS) | PRO | Full |
|
| Not applicable |
|
|
| |
Block Adult Physical Activity Screener - Year (Block PA_Adult04) | PRO | Basic |
|
| Not applicable |
|
|
| |
Block Kids 2-17 Screener (Block_K_Screen) | PRO | Basic |
|
| Not applicable |
|
|
| |
Block Kids Physical Activity Screener - Last Week (8-17)(Block_PA_KID04) | PRO | Basic |
|
| Not applicable |
|
|
| |
Behavior Rating Inventory of Executive Function®, Second Edition (BRIEF®2) | PRO or ObsRO | Full |
|
| Not applicable |
|
|
| |
Conners Comprehensive Behavior Rating Scales Self-Report Form (Conners CBRS Self-Report Form) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Child Occupational Self Assessment (COSA) | PRO | Basic |
|
| Not applicable |
|
|
| |
Central Relationship Questionnaire (CRQ) | PRO | Basic |
|
| Not applicable |
|
|
| |
Daily Hunger Questionnaire (DHQ) | PRO | Full |
|
| Not applicable |
|
|
| |
Eysenck Personality Questionnaire (EPQ) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Eysenck Personality Questionnaire Revised (EPQ-R) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Eysenck Personality Questionnaire Revised Short Form (EPQR-S) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Epworth Sleepiness Scale - Child Adolescent (ESS-CHAD) | PRO or ObsRO | Full |
|
| Not a Rare Disease |
|
|
| |
Groningen Activity Restriction Scale (GARS) | PRO | Full |
|
| Not applicable |
|
|
| |
World Health Organization Health and Work Performance Questionnaire (HPQ) | PRO | Basic |
|
| Not applicable |
|
|
| |
Inventory of Interpersonal Problems - 64 items (IIP - 64 items) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Inventory of Interpersonal Problems (IIP) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Improved Health Assessment Questionnaire (Improved HAQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Junior Temperament and Character Inventory (JTCI) | PRO | Full |
|
| Not applicable |
|
|
| |
Karolinska Sleepiness Scale (KSS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Lower Limb Functional Index (LLFI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Lower Limb Functional Index-10 (LLFI-10) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
MD Anderson Symptom Inventory (MDASI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Milford Epworth Sleepiness Scale (MESS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
modified Vision-Related Quality of Life Core Measure (mVCM1) | PRO | Full |
|
| Not applicable |
|
| ||
Neuro-QoL Scale v1.1 - Pediatric Lower Extremity | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Neuro-QoL Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL | PRO | Full |
|
| Not a Rare Disease |
|
| ||
NIH Toolbox - Emotion - Social Relationships - Social Distress | PRO or ObsRO | Basic |
|
| Not applicable |
|
|
| |
NIH Toolbox - Emotion - Social Relationships - Social Support | PRO | Basic |
|
| Not applicable |
|
|
| |
NIH Toolbox - Friendship FF Age 18+ v2.0 | PRO | Basic |
|
| Not applicable |
|
|
| |
NIH Toolbox - Loneliness FF Ages 8-17 v2.0 | PRO | Basic |
|
| Not applicable |
|
|
| |
NIH Toolbox - NIH Toolbox - Emotion - Social Relationships - Companionship | PRO or ObsRO | Basic |
|
| Not applicable |
|
|
| |
PROMIS - Pediatric Global Health Child-Report Form (PGH-7 Child-Report Form) | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Bank - Strength Impact | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Bank - Upper Extremity | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Bank v1.0 - Physical Activity | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Bank v2.0 - Mobility | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v1.0 - Physical Activity 4a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v1.0 - Physical Activity 8a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v1.0 - Strength Impact 4a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v1.0 - Strength Impact 8a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v2.0 – Mobility 8a | PRO | Full |
|
| Not applicable |
|
|
| |
PROMIS Pediatric Short Form v2.0 – Upper Extremity 8a | PRO | Basic |
|
| Not applicable |
|
|
| |
Patient-Specific Functional Scale (PSFS) | PRO | Basic |
|
| Not a Rare Disease |
|
| ||
Quality of Life Questionnaire™ (QLQ™) | PRO | Full |
|
| Not applicable |
|
|
| |
Quantity and Quality Method (QQ Method ) | PRO | Full |
|
| Not applicable |
|
|
| |
Split Week Self-Assessment of Sleep Survey (SASS-Y) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Social Problems Questionnaire (SPQ) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Stanford Sleepiness Scale (SSS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Time of Day Sleepiness Scale (ToDSS) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Upper Limb Functional Index (ULFI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Upper Limb Functional Index-10 (ULFI-10) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Wechsler Memory Scale - Fourth Edition (WMS-IV) | PRO | Basic |
|
| Not a Rare Disease |
|
|
| |
Work Role Functioning Questionnaire 2.0 (WRFQ 2.0) | PRO | Basic |
|
| Not applicable |
|
|
| |
Work Role Functioning Questionnaire-10 2.0 (WRFQ-10 2.0 ) | PRO | Basic |
|
| Not applicable |
|
|
| |
Work Role Functioning Questionnaire-5 2.0 (WRFQ-5 2.0 ) | PRO | Basic |
|
| Not applicable |
|
|
| |
Caregiver Quality of Life Index-Cancer (CQOLC) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Kidney Disease Quality of Life instrument (KDQOL™) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Screen for Caregiver Burden (SCB) | PRO | Full |
|
| Not applicable |
|
|
| |
Modified Caregiver Appraisal Scale (MCAS) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Marwit Meuser Caregiver Grief Inventory (MM-CGI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Zarit Burden Interview (ZBI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Caregiver Appraisal Scale (CAS) | PRO | Full |
|
| Not applicable |
|
|
| |
Burden of Treatment Questionnaire (TBQ) | PRO | Full |
|
| Not applicable |
|
|
| |
EORTC Quality of Life Questionnaire - Elderly Cancer Patients Module (EORTC QLQ-ELD14) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
CareGiver Oncology Quality of Life questionnaire (CarGOQoL) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Schizophrenia CareGiver Quality of Life Questionnaire (S-CGQoL) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Swallowing Quality of Life questionnaire (SWAL-QOL) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Treatment Related Impact Measure - Weight (TRIM-W) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Kidney Disease Quality of Life instrument - Short form™ (KDQOL-SF™) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Kidney Disease Quality of Life instrument™ - 36 items (KDQOL-36™ Survey) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
International Consultation on Incontinence Questionnaire Absorbent Pads (ICIQ-PadPROM) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Quality of Life Questionnaire - Bronchiectasis v3.1 (QOL-B v3.1) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Caregiver Burden Inventory (CBI) | PRO | Full |
|
| Not applicable -> Anorectal malformation |
|
|
| |
EORTC Quality of life Questionnaire - Pancreatic Cancer Module (EORTC QLQ-PAN26) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Patient-Reported Outcomes Measurement Information System® - Plus-Heart Failure (PROMIS® - Plus-HF) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Satisfaction of PAtients with Crohn's diseasE (SPACE-Q) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Asthma Symptom Utility Index (ASUI) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Functional Assessment of Cancer Therapy - General (FACT-G) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Health and Activity Limitation Index (HALex) | PRO | Full |
|
| Not applicable |
|
|
| |
McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Quality of Well-Being scale Self-Administered (QWB-SA) | PRO | Full |
|
| Not applicable |
|
|
| |
Brief Sexual Function Questionnaire (BSFQ) | PRO | Full |
|
| Not a Rare Disease |
|
|
| |
Cancer Therapy Satisfaction Questionnaire (CTSQ) | PRO | Full |
|
| Not a Rare Disease |
|
| ||
Family Environment Scale (FES) | PRO | Full |
|
| Not applicable |
|
|
| |
Child Health Utility (CHU9D) | PRO | Full |
|
|