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 and up to $90 per year for caregivers who complete brief surveys about their child's health
Advanced Parkinson's Disease (PD) patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120
ANCA-Associated Vasculitis (AAV or Polyangiitis), Idiopathic Inflammatory Myopathy (IIM or Myositis), Systemic Sclerosis (SSc or Scleroderma) patients ages 18-70 who have received autoimmune treatments United States
Clinical Trial
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) non-causcasian patients United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC) female 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
Breast Cancer patients United States
5-minute online survey, compensation is access to a medical record collection service
Breast Cancer (BC): Triple-Negative Breast Cancer (TNBC) patients United States
Passive metering app (span of 7-28 days), compensation is up to $500 based on days of interaction
Cancer (excluding Breast Cancer) non-caucasian male patients United States
20-minute online survey, compensation is $40
Chronic obstructive pulmonary disease (COPD): Stage 3/Stage 4 patients in the Louisville/Denver, CO area United States
3 1/2 hour in-person usability study, compensation is $300
Chronic Obstructive Pulmonary Disease (COPD) patients United States
60-minute web-assisted phone interview, compensation is $120
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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 Adrenal Hyperplasia (CAH) patients and caregivers United States
60-minute web-assisted phone interview + a 5-minute prework assignment, compensation is $120 for the interview and $25 for the prework assignment
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), Eczema (Atopic Dermatitis), Ulcerative Colitis (UC) patients ages 18+ and caregivers of adolescent patients ages 12-17 in Dallas, TX and surrounding areas (up to 3 hours drive time) or New York, NY United States
60-minute in-person interview, compensation is $150
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Depression (MDD): Postpartum patients United States
15-minute survey, compensation is $30
Diabetes (DM): Type 1 patients and caregivers United States
90-minute web-assisted phone interview, compensation is $180
Eczema: Chronic Hand Eczema caregivers and their adolescent patients ages 12-17 United States
1-2 hour interviews, compensation is $120 per hour
Epilepsy caregivers (of adolescents ages 12-17) and their patients United States
60-minute web-assisted phone interviews via online teleconference (up to 2 interviews), compensation up to $300
Esophageal Cancer patients United States
30-minute online interview, compensation is $60
Familial Chylomicronemia Syndrome (FCS), Pancreatitis patients United States
90-minute interview + pre-work assignment + confirmation of diagnosis, compensation is $225 total
Female patients ages 18-50 who have had cosmetic breast augmentation surgery United States
60-minute web-assisted phone interview, compensation is $120
Glycogen Storage Disease (GSD) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Head & Neck Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
30-minute web-assisted phone interview, compensation is $60
Heart Disease: Non-Obstructive Hypertrophic Cardiomyopathy (nHCM), Heart Disease: Symptomatic Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
Metering app interaction, compensation up to $225
Hemophilia A patients and caregivers United States
2-day in-person event in New Jersey, compensation is $150 per hour
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
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
High Cholesterol (Hyperlipidemia) patients United States
60-minute web-assisted phone interview, compensation is $120
HIV Spanish-speaking patients United States
10-minute online survey conducted in Spanish, compensation is $25
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
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
3-minute prescreener
Kidney Disease, Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) patients and caregivers United States
20-minute survey, compensation is $40
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
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Liver Disease (not hepatitis): NASH/MASH patients ages 18+ in Dallas, TX and surrounding areas (up to 3 hours drive time), or New York, NY United States
60-minute in-person interview, compensation is $150
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
Year long advisory board, compensation is $120/hour
Lung Cancer: Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview + 60-minute homework assignment, compensation is $175 for the interview and $175 for the homework assignment
Lupus: Lupus Nephritis (LN), Primary Membranous Nephropathy (pMN) patients ages 18-70 who have previously received 2 types of therapy for Kidney issues United States
Clinical Trial
Melanoma patients and caregivers United States
30-minute online interview, compensation is $60
Multifocal Motor Neuropathy(MMN) patients United States
30-minute Zoom interview, compensation is $60
Multifocal Motor Neuropathy (MMN) patients and caregivers United States
60-minute Zoom interview, compensation is $120
Multiple Myeloma (MM) 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
Mycobacterium Avium Complex (MAC), Non-Cystic Fibrosis Bronchiectasis (NCFB), Nontuberculous Mycobacterial (NTM) patients United States
Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Myelodysplastic Syndrome (MDS) patients and caregivers United States
90-minute web-assisted phone interview (patient) and 60-minute web-assisted phone interview (caregiver) + confirmation of diagnosis, compensation is $175 (patient/90-minute interview) and $125 (caregiver/60-minute interview) and $75 for confirmation of diagnosis
Neuralgia: Post Herpatic Neuralgia (PHN) patients United States
10-minute survey + 20-minute voice response, compensation is $60
Neuroendocrine Cancer (NET) (Carcinoid Cancer) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients taking/prescribed Brinsupri United States
Online surveys (6-month span), compensation provided for each survey completed
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patient United States
60-minute online interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Follicular Lymphoma patients United States
60-minute web-assisted phone interview + confirmation of diagnosis, compensation is $125
Pancreatic Cancer caregivers United States
60-minute web-assisted phone interview, compensation is $100
Paraganglioma, Pheochromocytoma (PCC) Patient Advocacy Groups United States
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, compensation is $120
Phenylketonuria (PKU) patients United States
60-minute web-assisted phone interview, compensation is $120
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
Postural Orthostatic Tachycardia Syndrome (POTS) patients and caregivers United States
60-minute web-assisted phone interview + 40-minute survey, compensation is $200
Primary Immune Thrombocytopenia (ITP) patients not taking Rituximab (Rituxan) United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $180
Psoriasis (PSO), Psoriatic Arthritis (PsA) African American, Asian, Hispanic patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Pulmonary Arterial Hypertension (PAH) patients diagnosed within the last year 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
Pulmonary Fibrosis (PF) patients and caregivers United States
30-minute web-assisted phone interview + 3.5 hour follow-up + 3.5 hour focus group, compensation is $100
Restless Leg Syndrome (RLS) patients United States
60-minute web-assisted phone interview, compensation is $120
Rheumatoid Arthritis (RA) patients ages 18+ in Dallas, TX and surrounding areas (up to 3 hours drive time) or New York, NY United States
60-minute in-person interview, compensation is $150
Rheumatoid Arthritis (RA) 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
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
Sinusitis: Rhinosinusitis patients United States
60-minute web-assisted phone interview, compensation is $120
Sjogren's Syndrome (SjS, SS) patients ages 40-60, males any race/ethnicity and non-caucasian females United States
60-minute web-assisted phone interview, compensation is $120
Tardive Dyskinesia (TD) patients United States
45-minute online survey, compensation is $90
Tenosynovial Giant Cell Tumor (TGCT) patients United States
30-minute web-assisted phone interview, compensation is $60
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
Urticaria (Hives): Chronic Spontaneous caregivers of children ages 18 and under United States
60-minute web-assisted phone interview, compensation is $120
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 patients 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
We have an opportunity to participate in a 20-minute online patient satisfaction survey, $25 reward
Canada
Breast Cancer (BC), Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Multiple Myeloma (MM), Prostate Cancer, Solid Tumor patients Canada
15-minute online survey, compensation is 26 CAD
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
Epilepsy: Dravet Syndrome (DS), Epilepsy: Lennox Gastaut Syndrome (LGS) caregivers United Kingdom
20-minute phone interview, compensation is 60 GBP
Familial Chylomicronemia Syndrome (FCS), Pancreatitis patients United Kingdom
90-minute interview + pre-work assignment + confirmation of diagnosis, compensation is 140 GBP total
High Triglycerides (Hypertriglyceridemia) patients United Kingdom
45-minute web-assisted phone interview, compensation is 40 GBP
France
Achondroplasia caregivers France
60-minute web-assisted phone interview, compensation is $120 USD
Germany
Achondroplasia caregivers Germany
60-minute web-assisted phone interview, compensation is $120 USD
High Triglycerides (Hypertriglyceridemia) patients Germany
45-minute web-assisted phone interview, compensation is 55 Euros
Italy
High Triglycerides (Hypertriglyceridemia) patients Italy
45-minute web-assisted phone interview, compensation is 55 Euros
Spain
More studies coming soon!
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@
