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.
Achondroplasia caregivers of children age 4 and under United States
60-minute web-assisted phone interview, compensation is $120
Ankylosing Spondylitis male patients United States
30-minute online survey, compensation is $60
Autosomal Dominant Polycystic Kidney Disease (ADPKD) or Chronic Kidney Disease (CKD) patients United States
4 week passive metering app, compensation is $120
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer patients United States
25-minute online survey, compensation is $50
Breast Cancer-Stage IV patients United States
4 Week Passive App Tracking, compensation is $120
Chronic Kidney Disease (CKD)/End Stage Renal Disease (ESRD, Kidney Failure) In-Home Hemodialysis patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Myeloid Leukemia (CML) patients comfortable talking about health on a secure and confidential website United States
$20 welcome reward after qualification
Chronic Myeloid (Myelogenous) Leukemia patients United States
30-minute online survey, compensation is $60
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
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)
Epilepsy: Infantile Spasms (IS) or Tuberous Sclerosis (TSC) Caregivers of children ages 0-8 who have used the following medications within the last 4 years on a child: SABRIL Powder for Oral Solution, Vigabatrin Powder for Oral Solution, or Vigadrone Powder for Oral Solution in the Chicago, Boston, New York City, or Miami Metro areas United States
120-minute in person interview, compensation is $360
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Gastric or Stomach Cancer patients United States
90-minute focus group, compensation is $150
Growth Hormone Deficiency (GHD), Noonan Syndrome, Small for Gestational Age, Turner Syndrome patients or caregivers of patients ages 10-17 United States
60-minute in-person interview, compensation is $180
Heart Disease and Atherosclerosis patients United States
60-minute web-assisted phone interview, compensation is $120
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hepatitis: Autoimmune patients United States
60-minute voice response survey, compensation is a $60 Amazon gift card
Hodgkins Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Idiopathic Pulmonary Fibrosis (IPF) patients United States
25-minute online survey, compensation is $50
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
Juvenile Idiopathic Arthritis (JIA) caregivers of children in New York, NY; Atlanta, GA; Raleigh, NC; Chicago, IL; and Philadelphia, PA United States
60-minute in-person interview, compensation is $500
Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $120
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
Kidney Transplant patients United States
60-minute web-assisted phone interview, compensation is $120
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Multiple Myeloma patients or caregivers United States
20-minute online survey, compensation is $40
Neuromyelitis Optica patients United States
20-minute online survey, compensation is $40
Non-Small Cell Lung Cancer (NSCLC) or Thyroid Cancer stage IV patients who have been on 2L+ of therapy United States
60-minute web-assisted phone interview, compensation is $100
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
40-minute online survey, compensation is $80
Obesity patients United States
15-minute online survey, compensation is $30
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Organic Acidemia (OA): Methylmalonic Acidemia (MMA) & Propionic Acidemia (PA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Osteogenesis Imperfecta caregivers of adolescent children ages 15-17 United States
60-minute web-assisted phone interview, compensation is $75
Phenylketonuria caregivers of adolescent children ages 12-17 United States
Online survey-up to 60 minutes, compensation is $65
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Synovial Sarcoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Vasculitis patients United States
60-minute online survey, compensation is $125
Vasculitis, Wegener's Granulomatosis With Polyangiitis (GPA) patients United States
120-minute focus group, compensation is $240
United Kingdom
Vasculitis, Wegener's Granulomatosis With Polyangiitis (GPA) patients United Kingdom
90-minute web-assisted phone interview, compensation is 90GBP
Canada
Addiction male patients Canada
90-minute web-assisted phone interview, compensation is 200 CAD
Hereditary Angioedema patients ages 12+ and caregivers Canada
90-minute virtual interview, compensation is $202 CAD
France
More studies coming soon!
Germany
More studies coming soon!
Italy
More studies coming soon!
Spain
Achondroplasia patients and caregivers Spain
60-minute web-assisted phone interview, compensation is 110 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@