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.
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United States
60-minute web-assisted phone interview, compensation is $120
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: Hereditary (hTTR) patients and caregivers United States
240-minute online community, compensation is $480
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-Stage IV patients United States
2 Week Passive App Tracking, compensation is $60
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 Kidney Disease (CKD) or End-Stage Renal Disease (ESRD) patients, caregivers, or patient advocacy group employees United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Chronic Lymphocytic Leukemia (CLL), Diffuse Large B Cell Lymphoma (DLBCL), or Multiple Myeloma (MM) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
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)
Colorectal (Colon) Cancer, Melanoma, 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
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)
Diffuse B Cell Lymphoma OR Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute pretask, compensation is $200
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
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
Hodgkins Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Idiopathic Inflammatory Myopathies (IIMs) with one of the subtypes: Anti-Synthetase Syndrome (ASyS), Dermatomyositis (DM), or Immune-Mediated Necrotizing Myopathy (IMNM) patients (age 18+) United States
90-minute web-assisted phone interview, compensation is $165 for the interview + $25 for full screening
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
Idiopathic Pulmonary Fibrosis (IPF) patients United States
25-minute online survey, compensation is $50
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
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
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Melanoma, Non-Small Cell Lung Cancer (NSCLC) patients United States
25 minute online survey, compensation is $50
Multiple Myeloma patients or caregivers United States
20-minute online survey, compensation is $40
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
40-minute online survey, compensation is $80
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
Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180
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
Prostate Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
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, Wegener's Granulomatosis With Polyangiitis (GPA) patients United States
120-minute focus group, compensation is $240
United Kingdom
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Primary Sjogren’s Syndrome patients United Kingdom
Two 60-minute web-assisted phone interviews (120-minute total) plus confirmation of diagnosis, compensation is 200 GBP for the interview and 40 GBP for confirmation of diagnosis
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@