We have hundreds of research studies open for patients and caregivers. Some 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 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 healthcare research studies.
UNITED STATES
| Study ID | Study Name/Details |
|---|---|
| 13501 W2 |
Acromegaly patients
United States
20-minute online survey, compensation is $40
|
| 11489 |
Advanced Parkinson’s Disease (PD) patients
United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
|
| 13307 |
Alopecia: Alopecia Areata (AA) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13760 |
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers
United States
60-minute online diary + 60-minute online interview, compensation is $120 for the online diary and $120 for the interview.
|
| 12105 |
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
|
| 13790 |
Anemia + Myelofibrosis patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12921 |
Asthma patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13380 W9 |
Asthma patients
United States
10-minute online survey, compensation is $25
|
| 11380 |
Atopic Dermatitis (Eczema) caregivers of children under 2
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12076 |
Atrial Fibrillation (AFIB) non-Causcasian patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13749 |
Attention Deficit Hyperactivity Disorder (ADHD) caregivers of childrens/adolescents ages 12-17
United States
30-minute online survey, compensation is $60
|
| 13765 |
Bladder Cancer patients ages 40-80 and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13040 |
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
|
| 1644 Sept Wave |
Breast Cancer (BC): Metastatic patients (Stage IV)
United States
25-minute survey, compensation is $50
|
| 13644 |
Bronchiectasis AND Cystic Fibrosis (CF) patients
United States
45-minute web-assisted phone interview, compensation is $90
|
| 13222 |
Calcium Pyrophosphate Deposition Disease (CPPD) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 10451 W2 | Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States |
| 11099 |
Chronic Obstructive Pulmonary Disease (COPD) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13660 |
Colorectal (Colon) Cancer patients
United States
30-minute online survey, compensation is $60
|
| 13230 |
Colorectal (Colon) Cancer, Rectal Cancer (CRC) patients
United States
90-minute web-assisted phone interview, compensation is $240
|
| 8282 |
Congenital Adrenal Hyperplasia (CAH) patients
United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
|
| 13180 P2 |
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
|
| 12757 |
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
|
| 13618 |
Congenital Thrombotic Thrombocytopenic Purpura (cTTP), Upshaw-Schulman Syndrome patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $100
|
| 11013 |
Crohn’s Disease (CD) patients
United States
3-year participation study, compensation based on tasks
|
| 13676 |
Dermatomyositis, Immune-Mediated Necrotizing Myopathy (IMNM) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13263 |
Endometrial Cancer Non-Caucasian patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13660 |
Endometrial Cancer patients
United States
30-minute online survey, compensation is $60
|
| 13616 |
Epilepsy: Angelman Syndrome caregivers
United States
30-minute online survey, compensation is $60
|
| 13230 |
Esophageal Cancer, Pancreatic Cancer patients
United States
90-minute web-assisted phone interview, compensation is $240
|
| 13613 |
Exocrine Pancreatic Insufficiency (EPI) patients
United States
10-minute online survey, compensation is $25
|
| 13622 |
Fibrodysplasia Ossificans Progressiva (FOP) patients
United States
30-minute web-assisted phone interview, compensation is $60
|
| 12933 |
Giant Cell Arteritis (GCA) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13370 |
Gorlin Syndrome (Nevoid Basal Cell Carcinoma Syndrome) patients
United States
60-minute web-assisted phone interview, compensation is $150
|
| 13641 |
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
|
| 11401 |
Heart Disease: Cardiomyopathy patients
United States
Clinical Trial
|
| 11023 |
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
|
| 12765 W3 |
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients
United States
30-minute online survey, compensation is $45
|
| 13638 |
Heart Disease: Pericarditis patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13495 |
Hemophilia A patients and caregivers
United States
10-minute online survey, compensation is $25
|
| 10932 |
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
|
| 13293 W2 |
Hereditary Angioedema (HAE) patients
United States
30-minute survey, compensation is $60
|
| 12093 |
Hidradenitis Suppurativa (HS) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13146 |
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients
United States
Clinical Trial
|
| 12643 |
High Cholesterol (Hyperlipidemia) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 11126 |
Hot Flashes and Vasomotor Symptoms (VMS) Hispanic Female patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12802 |
Hypersomnia: Idiopathic Hypersomnia (IS) male patients
United States
120-minute web-assisted phone interview, compensation is $120
|
| 12106 |
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
|
| 7048 |
IgA Nephropathy (Berger’s Disease) patients
United States
5 minute online survey
|
| 13326 |
IgG 4 Related Disease (IgG4-RD) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13772 |
Interstitial Lung Disease (ILD) or Non-Interstitial Lung Disease (Non-ILD) patients
United States
5-hour online journal + 60-minute follow-up interview, compensation is $600 for the online journal and $120 for the follow-up interview
|
| 13755 |
Interstitial Lung Disease (ILD), PH-ILD, Pulmonary Arterial Hypertension (PAH) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12755 | Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States |
| 13674 |
Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS) patients and caregivers
United States
45-minute web-assisted phone interview, compensation is $90
|
| 13813 |
Kidney Disease: IgA Nephropathy (Berger’s Disease)
United States
20-minute online survey with a possible follow-up 60-minute web-assisted phone interview, compensation is $40 for the online survey and $100 for the interview
|
| 11035 |
Kidney Disease: IgA Nephropathy (Berger’s Disease) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $90
|
| 11652 |
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
|
| 13797 |
Leukemia: Acute Myeloid Leukemia (AML) caregivers
United States
30-minute web-assisted phone interview, compensation is $60
|
| 13262 W2 |
Liver Disease (not hepatitis): Primary Biliary Cholangitis patients
United States
60-minute web-assisted interview, compensation is $120
|
| 13555 |
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
|
| 13072 |
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) ALK+ patients
United States
Opportunity for a year long study with multiple engagements
|
| 11928 |
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers
United States
Year long advisory board, compensation is $120/hour
|
| 13230 |
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
|
| 13339 |
Lupus: Cutaneous Lupus Erythematosus (CLE) African-American patients
United States
25-minute online survey, compensation is $50
|
| 13692 |
Macular Degeneration: Wet Macular Degeneration, Vision Impairment: Diabetic Macular Edema (DME) patients
United States
45-minute web-assisted phone interview, compensation is $90
|
| 13525 |
Mastocytosis (Mast Cell Activating Disease, MCAD) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12669 |
Mastocytosis (Mast Cell Activating Disease, MCAD) patients
United States
7 1/2 hour online advisory board, compensation is $130
|
| 12822 | Menopause female patients ages 55-80 United States |
| 13795 |
Mucopolysaccharidoses (MPS) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $180
|
| 13544 |
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
|
| 12583 |
Multiple Myeloma (MM) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13541 |
Muscular Dystrophy (MD): Duchenne Muscular Dystrophy (DMD) patients and caregivers
United States
Compensation is $200
|
| 13409 |
Muscular Dystrophy (MD): Myotonic Muscular Dystrophy (MMD patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13533 |
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)
|
| 13595 |
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
|
| 10681 P1 | Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States |
| 13664 |
Myelodysplastic Syndrome (MDS) patients
United States
60-minute web-assisted interview, compensation is $120
|
| 13516 |
Myelodysplastic Syndrome (MDS) patients
United States
60-minute web-assisted phone interview or 90-minute in-person interview (Boston area), compensation based on participation
|
| 12202 |
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
|
| 13847 |
Myelodysplastic Syndrome (MDS) patients and caregivers
United States
90-minute web-assisted phone interview, compensation is $120
|
| 10003 W4 |
Myelofibrosis patients
United States
25-minute online survey, compensation is $50
|
| 12713 W2 |
Neuropathy: Multifocal Motor Neuropathy (MMN) patients and caregivers
United States
60-minute zoom interview, compensation is $120
|
| 11982 |
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri
United States
Online surveys (6-month span), compensation provided for each survey completed
|
| 13321 |
Obesity Hispanic/Spanish-Speaking patients
United States
75-minute web-assisted phone interview + confirmation of diagnosis, compensation is $156
|
| 13691 |
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
|
| 13762 |
Ostomy patients in Atlanta (GA), Boston (MA), New York City (NY), Philadelphia (PA), San Jose (CA)
United States
60-minute in-person interview, compensation is $180
|
| 13660 |
Pancreatic Cancer patients
United States
30-minute online survey, compensation is $60
|
| 13030 |
Pancreatic Cancer patients
United States
60-minute web-assisted phone interview, compensation is $175
|
| 12916 |
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 11949 |
Phenylketonuria (PKU) patients and caregivers
United States
30-minute web-assisted phone interview, compensation is $60
|
| 11987 |
Philadelphia Chromosome–Positive Chronic Myeloid Leukemia (Ph+ CML) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13835 |
Polymyalgia Rheumatica (PMR) patients
United States
30-minute online survey, compensation is $60
|
| 13392 |
Polymyalgia Rheumatica (PMR) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13683 |
Prostate Cancer patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13564 |
Psoriatic Arthritis (PsA) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 11930 |
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump
United States
30-minute web-assisted phone interview, compensation is $50
|
| 13362 | Recurrent Respiratory Papillomatosis patients United States |
| 13694 |
Renal Cell Carcinoma (Kidney Cancer, RCC) patients and caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13573 |
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
|
| 12975 |
Schizophrenia patients who use Cobenfy
United States
Year long study with focus groups
|
| 12825 |
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
|
| 13856 |
Sepsis, Stroke patients and caregivers of adolescent patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 11772 |
Sinusitis: Rhinosinusitis patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13004 |
Stiff Person Syndrome (SPS) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 13660 |
Stomach (Gastric) Cancer patients
United States
30-minute online survey, compensation is $60
|
| 13802 |
Tardive Dyskinesia (TD) patients ages 26-75
United States
15-minute online survey, compensation is $30
|
| 13610 |
Tardive Dyskinesia (TD) patients and caregivers
United States
50-minute web-assisted phone interview, compensation is $90
|
| 12882 |
Tenosynovial Giant Cell Tumor (TGCT) patients
United States
30-minute web-assisted phone interview, compensation is $60
|
| 12546 |
Tumors Associated With Hypoglycemia (Hyperinsulinism) patients and caregivers
United States
Clinical Trial
|
| 2397 |
Ulcerative Colitis (UC) patients
United States
25-minute online survey, compensation is $50
|
| 13018 |
Ulcerative Colitis (UC) patients
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12732 |
Ulcerative Colitis (UC) patients in Ogden UT, New Iberia LA, Yonkers NY (60-mile radius)
United States
Clinical Trial
|
| 12385 |
Urticaria (Hives): Chronic Spontaneous patients ages 12-17 and their caregivers
United States
90-minute web-assisted phone interview, compensation is $200
|
| 11546 |
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
|
| 13349 |
Vitiligo caregivers
United States
60-minute web-assisted phone interview, compensation is $120
|
| 11566 |
Vitiligo patients ages 18+
United States
60-minute web-assisted phone interview, compensation is $120
|
| 12327 |
Von Willebrand Disease (VWD) patients
United States
Clinical Trial
|
CANADA
| Study ID | Study Name/Details |
|---|---|
| 13146 |
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients
Canada
Clinical Trial
|
UNITED KINGDOM
| Study ID | Study Name/Details |
|---|---|
| 13280 W2 |
Cushing’s Syndrome (Hypercortisolism) or Cushing’s Disease patients
United Kingdom
60-minute web-assisted phone interview, compensation is 75 GBP
|
| 13146 |
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients
United Kingdom
Clinical Trial
|
| 13305 |
HIV patients
United Kingdom
30-minute web-assisted phone interview + 5-minute pretask, compensation is $60 for the interview and $20 for the pretask
|
| 13514 |
Hyperemesis Gravidarum (HG, Morning Sickness) patients
United Kingdom
60-minute web-assisted phone interview, compensation is £90 UK (gift card)
|
| 13286 |
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
|
FRANCE
| Study ID | Study Name/Details |
|---|---|
| 13280 W2 |
Cushing’s Syndrome (Hypercortisolism) or Cushing’s Disease patients
France
60-minute web-assisted phone interview, compensation is 80 EURO
|
| 13094 P2 |
Myasthenia Gravis (MG) patients
France
30-40 minute online survey, compensation is 50 Euros
|
GERMANY
| Study ID | Study Name/Details |
|---|---|
| 13040 |
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
|
| 13094 P2 |
Myasthenia Gravis (MG) patients
Germany
30-40 minute online survey, compensation is 50 Euros
|
| 13349 |
Vitiligo caregivers
Germany
60-minute web-assisted phone interview, compensation is 40 EUR
|
ITALY
| Study ID | Study Name/Details |
|---|---|
| 13094 P2 |
Myasthenia Gravis (MG) patients
Italy
30-40 minute online survey, compensation is 50 Euros
|
SPAIN
More studies coming soon.
AUSTRALIA
| Study ID | Study Name/Details |
|---|---|
| 13146 |
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@
