As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.
We have hundreds of market research studies open for patients and caregivers. A few of the studies we are working to fill immediately are listed below.
If you are already a member of Rare Patient Voice and want to be considered for a patient-centric study listed below, please contact study.inquiries@rarepatientvoice.com
If you are NOT a member and are looking for study volunteer opportunities, please complete this sign-up process and include all medical conditions to be considered for one or more of the rare disease research studies listed below and any other similar studies.
Feel free to also share this page with friends or family who may be interested in participating in rare disease studies.
United States
Achondroplasia caregivers (children between the ages of 12-20) United States
60-minute web-assisted phone interview, compensation is $125
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Anemia and Heart Disease (diagnosed with both) patients United States
25-minute online survey, compensation is $50
Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia) (patients who do not receive regular transfusions as part of their medical treatment and must be able to provide proof of diagnosis) United States
60-90 minute web-assisted phone interview, compensation $75 for confirmation of diagnosis + $125 for interview
Bile Duct Cancer (Cholangiocarcinoma) or Stomach Cancer patients and caregivers United States
50-minute web-assisted phone interview, compensation is $100
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $120
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Cervical Dystonia or Spasticity patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Myasthenia Gravis, Myopathy patients (in the Chicago area) United States
75-minute in-person interview $175
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Congenital Adrenal Hyperplasia (CAH) caregivers (children between the ages of 1-17) United States
60-minute web-assisted phone interview, compensation is $120
Cytomegalovirus (CMV) patients and caregiver United States
60-minute web-assisted phone interview (WATI), compensation is $120
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Gestational Diabetes patients United States
30-minute web-assisted phone interview, compensation is $60
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Immune Thrombocytopenic Purpura (ITP) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Limb Girdle Muscular Dystrophy (LGMD) patients United States
60-minute web-assisted phone interviews, compensation is $100
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Myasthenia Gravis (MG), Neuromyelitis optica (NMO), or Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute web-assisted phone interview, compensation is $120
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Non-Small Cell Lung Cancer (NSCLC) AAPI female patients or caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Non-Small Cell Lung Cancer (NSCLC) patients (22+ years diagnosed within last 2 years) or caregivers United States
30-minute web-assisted phone interview (WATI), compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Prostate Cancer patients United States
60-minute web-assisted phone interviews, compensation is $120
Prostate Cancer patients United States
60-minute web-assisted phone interviews, compensation is $150
Relapsing Remitting MS (RRMS) patients (naive to Disease-modifying therapies (DMTs)) United States
60-minute web-assisted phone interview (WATI) plus 15-minute homework assignment, compensation is $200
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
United Kingdom
More studies coming soon!
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
France
More studies coming soon!
Germany
More studies coming soon!
Italy
More studies coming soon!
Spain
More studies coming soon!
Australia
More studies coming soon!
New Zealand
More studies coming soon!
Participate in Patient-Centric Clinical Trials
Rare Patient Voice presents various opportunities worldwide for patients and caregivers to participate in rare disease clinical trials with a patient-centric approach.
Sign up for these clinical trial opportunities and help move science forward today.
Please contact study.inquiries@
