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 adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Acute Myeloid Leukemia (AML), Lymphoma, Multiple Myeloma patients who participated in a clinical trial for NK Cell therapy United States
120-minute web-assisted phone interview, compensation is $240
Alzheimer's Male Caregivers United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $160 for the interview and $50 for confirmation of diagnosis
Amyloidosis Patients and Caregivers United States
60-minute web-assisted phone interview, compensation is $120
Antisynthetase Syndrome, Dermatomyositis, Immune-Mediated Necrotizing Myopathy, Myasthenias patients United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB) patients United States
10-minute online survey, compensation is $25
Atrial Fibrillation (AFIB) patients diagnosed within the last 18 months United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $120 for the interview and $60 for confirmation of diagnosis
Avoidant Restrictive Food Intake Disorder (ARFID), Cancer, Cerebral Palsy, Cystic Fibrosis, Irritable Bowel Syndrome (IBS) caregivers (Ages 18 Months to 3 Years) United States
90-minute web-assisted phone interview plus a 30-minute diary, compensation is $180 for the interview and $60 for the diary
Bile Duct Cancer (Cholangiocarcinoma), Biliary Tract Cancer patients United States
30-minute online survey and voice response, compensation is a $60 amazon gift card
Bladder Cancer, Melanoma, Renal Cell Carcinoma, Stomach Cancer Patients & Caregivers United States
40-minute online survey, compensation is $80
Bone Marrow Transplant, Collagen Vascular Disease, Graft Versus Host Disease (GVHD), Organ Transplant or Systemic Sclerosis (Scleroderma) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Breast Cancer, Multiple Sclerosis (MS), Paroxysmal Nocturnal Hemoglobinuria (PNH), Psoriasis Patients United States
20-minute online survey, compensation is $40
Breast Cancer patients (ages 35-75) United States
20-minute online survey, compensation is $40
Breast Cancer patients United States
This is a 5-minute online survey for free access to a medical record collection service.
Cervical Cancer patients (diagnosed withing the last 5 years) United States
60-minute web-assisted phone interview (WATI) + 15-minute homework, compensation is $150
Chronic or Congestive Heart Failure patients (40-64 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Chronic Kidney Disease (CKD) Patients United States
30-minute online survey + confirmation of diagnosis required (COD), compensation is $110
Chronic obstructive pulmonary disease (COPD) Patients and Patients/Caregiver Duos - Los Angeles and surrounding area United States
80-minute in-person interview, compensation is $240
Chronic Spontaneous or Idiopathic Urticaria patients United States
60-minute online interview, compensation is $125 (interview) and $50 (POC-proof of confirmation)
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Clostridium Difficile (C Diff) male patients United States
10-minute online survey, compensation is $25
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
Cognitive Impairment African-American patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Congenital Adrenal Hyperplasia patients United States
30-minute web-assisted phone interview, compensation is $120
Coronary Artery Disease (CAD) patients ages 60-75 United States
60-minute web-assisted phone interview + 10-minute pre-work, Compensation is $120 + $25 for pre-work
Crohn's Disease (CD), Eczema, Juvenile Idiopathic Arthritis, Psoriatic Arthritis (PsA) or Ulcerative Colitis adolescent patients and caregivers (living in Philadelphia) United States
30-minute training & 75-minute interview or a 75-minute interview, compensation training is $100, interview is $225
Crohn's Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Duchenne Muscular Dystrophy (DMD) Caregivers of Patients under age 5 United States
60-minute web-assisted phone interview, compensation is $120
Duchenne Muscular Dystrophy (DMD) Patients and Caregivers (Caregivers must be for Patients under age 30) United States
60-minute web-assisted phone interview, compensation is $120
Dupytren’s of the Foot, Fibromas, Ledderhose Disease, Plantar Fibromatosis patients United States
60-minute web-assisted phone interview, compensation is $120
End Stage Renal Disease (ESRD) patients & caregivers United States in the CA, OH, TX area
120-minute web-assisted phone interview, compensation is $90
Eosinophilic Esophagitis (EOE) Caregivers (Ages 1-17) & Patients (Ages 18-60) United States
60-minute web-assisted phone interview, compensation is $120
Epilepsy/Seizures male patients & caregivers of male patients (ages 12-17) United States
30-minute online survey, compensation is $60
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Gout Patients United States
60-minute web-assisted phone interview, compensation is $120
Growth Hormone Deficiency patients and caregivers (3-12 years) United States
45-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), compensation is $125
Heart Disease patients (Los Angeles, CA; New Orleans, LA) United States
In-person interview, compensation is $180/hr
Hemophilia A & B Patients & Caregivers United States
30-minute online survey, compensation is $60
Hemophilia B patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hemophilia patients and caregivers United States
60-minute in-person interview, compensation is $225
Hepatitis D patients United States
30-minute activities during a 2-3 week time period, compensation is $60
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $180
Hidradenitis Suppurativa patients ages 18-54 United States
20-minute online survey, compensation is $60
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
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Infertility patients and donors United States
60-minute web-assisted phone interview, compensation is $120
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), OR Pulmonary Fibrosis (PF) patients (currently using or have used Tyvaso Nebulizer or Tyvaso DPI) United States
60-minute web-assisted zoom interview (WATI), compensation is $120
Juvenile Arthritis (JA) or Giant Cell Arteritis (GCA) adolescent patients or caregivers of adolescents United States
60-75-minutes in-person interview, compensation is from $150
Kidney Disease: Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN, ICGN, Ig-MPGN) patients & caregivers United States United States
60-minute web-assisted phone interview, compensation is $120
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Lyme Disease patients diagnosed within the last year United States
60-minute web-assisted phone interview, compensation is $175
Metastatic Breast Cancer Patients United States
30-minute web-assisted phone interview, compensation is $60
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Mitochondrial Myopathy Patients United States
60-minute web-assisted phone interview, compensation is $125
Multiple Myeloma patients and caregivers United States
30-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $60 for the interview and $30 for the homework assignment
Multiple Sclerosis (MS) Patients under 35 United States
60-minute web-assisted phone interview, compensation is $120
Multiple Sclerosis patients United States
25-minute online survey, compensation is $50
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Myasthenia Gravis caregivers United States
45-minute online survey, compensation is $90
Myasthenia Gravis (MG) patients (diagnosed in last 2 years) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Myasthenia Gravis (MG) Patients Ages 50 and under diagnosed within the last 3 years United States
60-minute web-assisted phone interview, compensation is $120
Neuromyelitis Optica (NMO) Patients United States
45-minute online survey, compensation is $90
Non-Small Cell Lung Cancer (NSCLC) Patients United States
40-minute online survey, compensation is $80
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).
Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180
Ovarian Cancer Patients & Caregivers United States
15-minute online survey, compensation $80
Ovarian Cancer Patients & Caregivers United States
15-Minute online survey, compensation $30
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
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)
Pediatric Bone Marrow Transplant (BMT) (Stem Cell Transplant) caregivers for patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
Peyronie's Disease patients United States
in-person interviews
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
Relapsing Remitting Multiple Sclerosis (RRMS) Patients ages 18-30 United States
30-minute online survey, compensation is $60
Relapsing Remitting Multiple Sclerosis (RRMS) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $150
Renal Cell Carcinoma (RCC) Patients United States
30-minute online-survey, compensation is $80
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
Spinal Muscular Atrophy (SMA) Caregivers United States
45-minute online survey, compensation is $90
Spinal Muscular Atrophy Patients United States
30-minute online survey, compensation is $55
Systemic Mastocytosis patients United States
20-minute online survey, compensation is $40
Tourette Syndrome patients (ages 18-30) & caregivers (of patients ages 4-18) United States
60-minute web-assisted phone interview, compensation is $120
Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158
Wet Macular Degeneration Patients United States
60-minute web-assisted phone interview, compensation is $120
Wet Macular Degeneration patients United States
60-minute web-assisted phone interview (WATI), compensation is $105
United Kingdom
Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United Kingdom
45-minute web-assisted phone interview, compensation is 100 GBP
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP ($90 USD)
Chronic Lymphocytic Leukemia (CLL) patients & caregivers ages 50+ United Kingdom
60-minute web-assisted phone interview, compensation is a 90 GBP gift card
Hepatitis D patients United Kingdom
30-minute activities during a 2-3 week time period, compensation is $60
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
Secondary Immune Deficiency (SID) Patients United Kingdom
60-minute web-assisted phone interview + 15-minute prework, compensation is 75 GBP (interview) + 20 GBP (prework)
Spinal Muscular Atrophy (SMA) Caregivers United Kingdom
45-minute online survey, compensation is 75 GBP
Wet Macular Degeneration patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 49 GBP
Canada
Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275
France
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
45-minute web-assisted phone interview, compensation is 115 EUR
Hemophilia A patients France
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR
Wet Macular Degeneration patients France
60-minute web-assisted phone interview (WATI), compensation is 40 Euro
Germany
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 115 EUR
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR
Hemophilia A patients Germany
30-minute web-assisted phone interview (WATI), compensation is 55 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Secondary Immune Deficiency (SID) Patients Germany
60-minute web-assisted phone interview + 15-minute prework, compensation is 80 EUR (interview) + 20 EUR (prework)
Spinal Muscular Atrophy (SMA) Caregivers Germany
45-minute online survey, compensation is 85 EUR
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Wet Macular Degeneration patientsGermany
60-minute web-assisted phone interview (WATI), compensation is 50 Euro
Italy
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Italy
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Italy
45-minute web-assisted phone interview, compensation is 115 EUR
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 EUR
Spinal Muscular Atrophy (SMA) Caregivers Italy
45-minute online survey, compensation is 85 EUR
Wet Macular Degeneration patients Italy
60-minute web-assisted phone interview (WATI), compensation is 54 EUR
Spain
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Spain
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Spain
45-minute web-assisted phone interview, compensation is 115 EUR
Wet Macular Degeneration patients Spain
60-minute web-assisted phone interview (WATI), compensation is 37 EUR
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@
