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
Acromegaly patients United States
20-minute online survey, compensation is $40
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Alopecia: Alopecia Areata (AA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alpha 1 Antitrypsin Deficiency (A1AD) patients ages 45+ United States
30-minute online survey, compensation is $50
Alzheimer's Disease (AD), Cognitive Impairment (CI) patients and caregivers United States
50-minute online bulletin board with optional 60-minute follow up interview, compensation is $100 for the online bulletin board and $120 for the interview
ANCA-Associated Vasculitis (AAV or Polyangiitis), Idiopathic Inflammatory Myopathy (IIM or Myositis), Rheumatoid Arthritis (RA), Systemic Sclerosis (SSc or Scleroderma) patients ages 18-70 who have received autoimmune treatments United States - Clinical Trial
Asthma patients United States
10-minute online survey, compensation is $25
Asthma patients United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atrial Fibrillation (AFIB), Deep Vein Thrombosis (DVT), Pulmonary Embolism (PE) patients United States
15-minute online survey, compensation is $30
Atrial Fibrillation (AFIB) non-causcasian patients United States
60-minute web-assisted phone interview, compensation is $120
Autoimmune Encephalitis (AE) patients United States
60-minute web-assisted phone interview + 30-minute pre-work task, compensation is $225
Breast Cancer (BC) female patients United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $119 for the interview and $60 for confirmation of diagnosis
Breast Cancer (BC): Metastatic (HER2+/HR-) patients United States
30-minute online survey, compensation is $60
Breast Cancer (BC): Metastatic patients (Stage IV) United States
25-minute survey, compensation is $50
Bronchiectasis AND Cystic Fibrosis (CF) patients United States
45-minute web-assisted phone interview, compensation is $90
Calcium Pyrophosphate Deposition Disease (CPPD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Cancer patients ages 22-39 United States
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Obstructive Pulmonary Disease (COPD) patients ages 40-75 United States
15-minute online survey, compensation is $30
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer, Rectal Cancer (CRC) patients United States
90-minute web-assisted phone interview, compensation is $240
Congenital Adrenal Hyperplasia (CAH)/Classic caregivers of patients ages 4-17 United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $200 for the interview and $50 for confirmation of diagnosis
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 Hearing Loss patients ages 18-22 and caregivers (age 18+) of patients under age 22 United States
60-minute web-assisted phone interview, compensation is $120
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Dermatomyositis, Immune-Mediated Necrotizing Myopathy (IMNM) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dermatitis Herpetiformis (DH) patients United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer Non-Caucasian patients United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer, Ovarian Cancer patients United States
15-minute online survey, compensation is $30
Endometrial Cancer patients United States
30-minute online survey, compensation is $60
Epilepsy: Angelman Syndrome caregivers United States
30-minute online survey, compensation is $60
Epstein-Barr Virus Vaccine patients ages 18-30 and caregivers of patients ages 9-17 United States
60-minute web-assisted phone interview, compensation is $120
Esophageal Cancer, Pancreatic Cancer patients United States
90-minute web-assisted phone interview, compensation is $240
Exocrine Pancreatic Insufficiency (EPI) patients United States
10-minute online survey, compensation is $25
Fibrodysplasia Ossificans Progressiva (FOP) patients United States
30-minute web-assisted phone interview, compensation is $60
Giant Cell Arteritis (GCA) patients United States
60-minute web-assisted phone interview, compensation is $120
Gorlin Syndrome (Nevoid Basal Cell Carcinoma Syndrome) patients United States
60-minute web-assisted phone interview, compensation is $150
Heart Disease: Cardiomyopathy patients United States
Clinical Trial
Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Heart Disease, High Cholesterol (Hyperlipidemia) patients and caregivers United States
60-minute or 75-minute in-person interview, compensation is $200 for the 60-minute interview and $225 for the 75-minute interview
Heart Disease: Pericarditis patients United States
60-minute web-assisted phone interview, compensation is $120
Heart Disease: Pericarditis patients United States
75-minute web-assisted phone interview, compensation is $175
Hemophilia A patients and caregivers United States
10-minute online survey, compensation is $25
Hepatitis: Hepatitis C (Hep C) male or Non-Caucasian female patients United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hereditary Angioedema (HAE) patients United States
30-minute survey, compensation is $60
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients United States
Clinical Trial
High Cholesterol (Hyperlipidemia) patients United States
60-minute web-assisted phone interview, compensation is $120
Hot Flashes and Vasomotor Symptoms (VMS) Hispanic Female patients United States
60-minute web-assisted phone interview, compensation is $120
Hypersomnia: Idiopathic Hypersomnia (IS) male patients United States
120-minute web-assisted phone interview, compensation is $120
Hypertrophic Obstructive Cardiomyopathy (oHCM) patients ages 20-29 and caregivers of patients ages 10-25 United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients United States
5 minute online Survey
IgG 4 Related Disease (IgG4-RD) patients United States
60-minute web-assisted phone interview, compensation is $120
IgG 4 Related Disease (IgG4-RD) patients and caregivers United States
60-minute web-assisted phone interview + 15-minute pre-work task, compensation is $120
Immune Thrombocytopenic Purpura (ITP) patients United States
90-minute online community + 60-minute follow-up web-assisted phone interview, compensation is $370
Incontinence, Overactive Bladder (OAB) patients United States
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
35-minute online survey, compensation is $70
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Kidney Disease: Polycystic Kidney Disease (PKD) patients United States
60-minute web-assisted phone interview plus a 45-minute week-long diary, compensation is $120 for the interview and $90 for the follow up diary
Liver Disease (not hepatitis): Alcohol-Related Liver Disease (ARLD) patients United States
25-minute online survey, compensation is $50
Liver Disease (not hepatitis): Fatty Liver Disease (NAFLD), Liver Disease (not hepatitis): NASH/MASH patients United States
90-minute focus group, compensation is $180
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) ALK+ patients United States
Opportunity for a year long study with multiple engagements
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Lung Cancer: Small Cell Lung Cancer, Mesothelioma patients United States
90-minute web-assisted phone interview, compensation is $240
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) + ROS1 patients United States
45-minute web-assisted phone interview + 10-minute prework assignment, compensation is $90 for the interview and $40 for the prework assignment
Lupus: Cutaneous Lupus patients United States
60-minute web-assisted phone interview, compensation is $120
Lupus: Systemic Lupus Erythematosus (SLE) non-caucasian female patients or Cutaneous Lupus Erythematosus (CLE) patients United States
25-minute online survey, compensation is $50
Macular Degeneration: Dry Macular Degeneration patients ages 60+ United States
60-minute web-assisted phone interview, compensation is $120
Macular Degeneration: Wet Macular Degeneration, Vision Impairment: Diabetic Macular Edema (DME) patients United States
45-minute web-assisted phone interview, compensation is $90
Macular Degeneration: Wet Macular Degeneration, Vision Impairment: Diabetic Macular Edema (DME) patients (ages 45-99) and caregivers United States
45-minute web-assisted phone interview, compensation is $125
Mastocytosis (Mast Cell Activating Disease, MCAD) patients United States
60-minute web-assisted phone interview, compensation is $120
Menopause female patients ages 55-80 United States
Multifocal Motor Neuropathy (MMN) patients United States
30-minute Zoom interview, compensation is $60
Multiple Myeloma (MM) patients United States
60-minute web-assisted phone interview or 240-minute online bulletin board, compensation is $150 for the interview and $450 for the online bulletin board
Multiple Myeloma (MM) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) patients and caregivers United States
Compensation is $200
Muscular Dystrophy (MD): Myotonic Muscular Dystrophy (MMD) patients United States
60-minute web-assisted phone interview + 30-minute homework assignment, compensation is $120 for the interview and $60 for the homework (confirmation of diagnosis required)
Muscular Dystrophy (MD): Myotonic Muscular Dystrophy (MMD patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients United States
60-minute web-assisted phone interview, compensation is $120
Myasthenia Gravis (MG) patients and caregivers United States
60 or 70-minute in-person interview, compensation is $180 for the 60-minute interview or $225 for the 70-minute interview
Myasthenia Gravis (MG) patients and caregivers United States
30-minute online survey, compensation is $60
Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States
Myelodysplastic Syndrome (MDS) patients United States
60-minute web-assisted phone interview, compensation is $120
Myelodysplastic Syndrome (MDS) patients United States
60-minute web-assisted phone interview or 90-minute in-person interview (Boston area), compensation based on participation
Myelodysplastic Syndrome (MDS) patients United States
75-minute web-assisted phone interview + confirmation of diagnosis, compensation is $220 for the interview and $150 for confirmation of diagnosis
Neuroendocrine Carcinoma (NEC) patients United States
60-minute web-assisted phone interview, compensation is $125
Neuropathy: Multifocal Motor Neuropathy (MMN) patients and caregivers United States
Patients: 60-minute web-assisted phone interview + 60-minute follow-up online bulletin board, compensation is $125 for the interview and $125 for the online bulletin board; caregivers: 30-minute web-assisted phone interview only, compensation is $75
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri United States
Online surveys (6-month span), compensation provided for each survey completed
Obesity Hispanic/Spanish-Speaking patients United States
75-minute web-assisted phone interview + confirmation of diagnosis, compensation is $156
Obesity patients in the Minneapolis, Nashville, and Portland areas United States
90-minute online bulletin board, compensation is $180
Organic Acidemia (OA): Methylmalonic Acidemia (MMA), Organic Acidemia (OA): Propionic Acidemia (PA) patients and caregivers United States
Eligible participants will receive a $250 egift card
Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Pancreatic Cancer patients United States
30-minute online survey, compensation is $60
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
PH-ILD (Pulmonary Hypertension associated with Interstitial Lung Disease) patients United States
60-minute web-assisted phone interview or in-person interview + 15-minute homework assignment, compensation is $170 for the interview and $30 for the homework assignment
Phenylketonuria (PKU) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Philadelphia Chromosome–Positive Chronic Myeloid Leukemia (Ph+ CML) patients United States
60-minute web-assisted phone interview, compensation is $120
Polymyalgia Rheumatica (PMR) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Postural Orthostatic Tachycardia Syndrome (POTS) patients and caregivers United States
60-minute web-assisted phone interview + 40-minute survey, compensation is $200
Prostate Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients 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
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump United States
30-minute web-assisted phone interview, compensation is $50
Recurrent Respiratory Papillomatosis patients United States
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview with the possibility of a one-time follow up interview, compensation is $120
Schizophrenia patients who use Cobenfy United States
Year long study with focus groups
Scleroderma: Systemic Scleroderma patients United States
60-minute online bulletin board plus a 60-minute web-assisted follow up phone interview, compensation is $120 for the online bulletin board and $120 for the follow up interview
Short Bowel Syndrome (SBS, Short Gut) adult patients and caregivers of patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Sinusitis: Rhinosinusitis patients United States
60-minute web-assisted phone interview, compensation is $120
Skin Cancer: Squamous Cell Carcinoma (SCC) or Basal Cell Cancer patients United States
25-minute online survey, compensation is $50
Spinal Muscular Atrophy (SMA) patients and caregivers United States
Online survey + EHR (Electronic Health Record) upload, compensation is $100
Spinal Muscular Atrophy (SMA) patients and caregivers United States
40-minute online survey, compensation is $80
Stiff Person Syndrome (SPS) patients United States
60-minute web-assisted phone interview, compensation is $120
Stomach (Gastric) Cancer patients United States
30-minute online survey, compensation is $60
Tardive Dyskinesia (TD) patients and caregivers United States
50-minute web-assisted phone interview, compensation is $90
Tenosynovial Giant Cell Tumor (TGCT) patients United States
30-minute web-assisted phone interview, compensation is $60
Thyroid Eye Disease (TED) patients United States
60-minute web-assisted phone interview, compensation is $120
Tumors Associated With Hypoglycemia (Hyperinsulinism) patients and caregivers United States
Clinical Trial
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
Ulcerative Colitis (UC) patients United States
60-minute web-assisted phone interview, compensation is $120
Ulcerative Colitis (UC) patients in Ogden UT, New Iberia LA, Yonkers NY (60-mile radius) United States
Clinical Trial
Urticaria (Hives): Chronic Spontaneous patients ages 12-17 and their caregivers United States
90-minute web-assisted phone interview, compensation is $200
Urticaria (Hives): Chronic Spontaneous patients ages 18 and over and caregivers of patients ages 12 and older United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
Vitiligo caregivers United States
60-minute web-assisted phone interview, compensation is $120
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Von Willebrand Disease (VWD) patients United States
Clinical Trial
Wilson's Disease (Hepatolenticular Degeneration) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Canada
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Canada
Clinical Trial
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers Canada
60-minute web-assisted phone interview + a 30-minute homework assignment, compensation is $180
United Kingdom
Endometrial Cancer patients United Kingdom
60-minute web-assisted phone interview, compensation is $120 USD
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients United Kingdom
Clinical Trial
HIV patients United Kingdom
30-minute web-assisted phone interview + 5-minute pretask, compensation is $60 for the interview and $20 for the pretask
Hyperemesis Gravidarum (HG, Morning Sickness) patients United Kingdom
60-minute web-assisted phone interview, compensation is £90 UK (gift card)
Neuropathy: Multifocal Motor Neuropathy (MMN) patients and caregivers United Kingdom
Patients: 60-minute web-assisted phone interview + 60-minute follow-up online bulletin board, compensation is 75 GBP for the interview and 75 GBP for the online bulletin board; caregivers: 30-minute web-assisted phone interview only, compensation is 37.5 GBP
Pancreatic Cancer patients United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
France
Myasthenia Gravis (MG) patients France
30-40 minute online survey, compensation is 50 Euros
Germany
Breast Cancer (BC) female patients Germany
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 80 Euros for the interview and 40 Euros for confirmation of diagnosis
Breast Cancer BC) patients Germany
20-minute online survey, compensation is 34.65 Euros
Endometrial Cancer patients Germany
60-minute web-assisted phone interview, compensation is $120 USD
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Germany
Myasthenia Gravis (MG) patients Germany
30-40 minute online survey, compensation is 50 Euros
Pancreatic Cancer patients Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Vitiligo caregivers Germany
60-minute web-assisted phone interview, compensation is 40 EUR
Italy
Myasthenia Gravis (MG) patients Italy
30-40 minute online survey, compensation is 50 Euros
Spain
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Spain
Australia
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Australia
Clinical Trial
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@
