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: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform.
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 10-17) in the United States
Join a 120-minute in-person interview. Compensation is $565 to $835.
Acute Kidney Injury (AKI) patients and caregivers United States
60-minute web-assisted phone interview for patients or 90-minute web-assisted phone interview for patients and caregivers together, compensation is $120 for the patient only interview and $180 for the patient and caregiver interview
Adenine Phosphoribosyltransferase (APRT) Deficiency, Autosomal Dominant Polycystic Kidney Disease (ADPKD), Cystinuria, Dent Disease, G6PD Deficiency (Glucose-6-Phosphate-Dehydrogenase Deficiency), Hemophilia, Primary Hyperoxaluria, Sickle Cell Disease (SCD), Thalassemia Middle-Eastern or North-African patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Amyloidosis: ATTR-CM, Familial ATTR, Wild-Type ATTR patients United States
20-minute online survey, compensation is $40
Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States
60-minute in-person interview, compensation is $150/patient and $150/caregiver
Atherosclerotic Cardiovascular Disease (ASCVD), Ischemic Stroke, Myocardial Infarction (MI)/Heart Attack, Peripheral Artery Disease (PAD) patients in the New York Metro area United States
60-minute in-person interview, compensation is $180
Beta Thalassemia (Cooley’s Anemia), Cancer, Eczema (Atopic Dermatitis), Eosinophilic Esophagitis (EOE), Hodgkin's Lymphoma, Inflammatory Bowel Disease (IBD), Rheumatoid Arthritis (RA) caregivers of pediatric patients in Boston, Chicago, Dallas United States
60-minute in-person interview, compensation is $300
Breast Cancer caregivers United States
25-minute online survey, compensation is $50
Breast Cancer patients (stage IV metastatic) United States
25-minute online survey, compensation is $50
Breast Cancer patients and caregivers United States
10-minute in-person survey (to include doctor), compensation is $150
Cancer: Colorectal Cancer, Endometrial Cancer, Gastric/Stomach Cancer, Melanoma, Prostate Cancer patients United States
20-minute online survey, compensation is $40
Carriers of X-Linked Chronic Granulomatous Disease (X-CGD) United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $50 for the homework
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients who have taken Vyvgart United States
60-minute web-assisted phone interview, compensation is $120
Chronic Myeloid (Myelogenous) Leukemia (CML) male patients and caregivers of male patients United States
30-minute online survey, compensation is $60
Chronic Spontaneous Hives patients ages 40 and under United States
20-minute online survey, compensation is $40
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 Hyperinsulinism (HI) patients United States
60-minute zoom interview, compensation is $120
Diffuse Large B-Cell Lymphoma (DLBCL) patients United States
60-minute web-assisted phone interview, compensation is $120
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma, Non-Hodgkin's Lymphoma caregivers United States
20-minute online survey, compensation is $40
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dravet Syndrome caregivers United States
Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy pediatric caregivers United States
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy: Cluster Seizures patients or patients prescribed a seizure rescue treatment United States
20-minute online survey, compensation is $40
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Gaucher Disease (GD), Hereditary Angioedema patients ages 18-79 and caregivers United States
20-minute online survey, compensation is $40
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Grave's Disease, Thyroid Eye Disease (TED) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Head & Neck Cancer patients United States
60-minute focus group, compensation is $120
Hemophilia A & B patients and caregivers United States
30-minute online survey, compensation is $60
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
HIV patients United States
30-minute web-assisted phone interview, compensation is $60
Hypertrophic Obstructive Cardiomyopathy (HOCM) patients United States
Hypochondroplasia caregivers United States
75-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is $250
Idiopathic Pulmonary Fibrosis (IPF), Progressive Fibrosing Interstitial Lung Disease (PF-ILD) patients and caregivers United States
35-minute online survey, compensation is $70
IgA Nephropathy (Berger’s Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Immune Thrombocytopenic Purpura (ITP) patients United States
10-minute online survey, compensation is $25
Immune Thrombocytopenic Purpura (ITP) patients United States
5-10 minute in-person recording of doctor visit, compensation is $150
Interstitial Lung Disease, Systemic Scleroderma patients United States
90-minute web-assisted phone interview, compensation is $250
Liver Disease (not hepatitis): NASH/MASH, Fatty Liver Disease (NAFLD) non-caucasian patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma patients and caregivers United States
60-75 minute web-assisted phone interview plus 10-minute homework assignment plus 4-hour mobile ethnography, compensation is $120-$175 for the interview (based on length of interview, $25 for the homework assignment and $570 for the mobile ethnography
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Paroxysmal Nocturnal Hemoglobinuria patients United States
20-minute online survey, compensation is $40
Primary Biliary Cholangitis (PBC) patients United States
30-minute web-assisted phone interview, compensation is $60
Primary Biliary Cholangitis (PBC) patients United States
20-minute online survey, compensation is $40
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview, compensation is $120
Progressive Multifocal Leukoencephalopathy patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients and caregivers United States
20-minute online survey, compensation is $40
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Spinal Muscular Atrophy (SMA) caregivers of pediatric patients United States
30-minute online survey, compensation is $60
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Thyroid Eye Disease (TED) male patients United States
45-minute web-assisted phone interview, compensation is $100
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Vitiligo patients United States
30-minute online survey, compensation is $60
Von Willebrand Disease Type 1 female patients United States
10-minute online survey, compensation is $25
Wet AMD (nAMD) patients diagnosed within the last 12 months United States
60-minute web-assisted phone interview, compensation is $120
United Kingdom
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Glaucoma patients ages 40+ United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Primary Biliary Cholangitis (PBC) patients United Kingdom
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Canada
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada
60-minute online bulletin board, compensation is 120 CAD
Primary Biliary Cholangitis (PBC) patients Canada
30-minute web-assisted phone interview
France
Primary Biliary Cholangitis (PBC) patients France
30-minute web-assisted phone interview
Germany
Primary Biliary Cholangitis (PBC) patients Germany
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Primary Biliary Cholangitis (PBC) patients Italy
30-minute web-assisted phone interview
Spain
Primary Biliary Cholangitis (PBC) patients Spain
30-minute web-assisted phone interview
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
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.
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