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
Alopecia: Alopecia Areata (AA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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
60-minute web-assisted phone interview, compensation is $120
Asthma: Severe Eosinophilic Asthma patients in Warwick, RI (and 60 mile radius) United States
Clinical Trial
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
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 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
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
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
25-minute online survey, compensation is $50
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
25-minute online survey, compensation is $50
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), 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), Hidradenitis Suppurativa (HS), Ulcerative Colitis (UC) patients in the Atlanta, GA and Boston, MA areas United States
60-minute in-person interview, compensation is $150
Crohn’s Disease (CD), Irritable Bowel Disease (IBD), Ulcerative Colitis (UC) patient advocacy groups United States
45-minute web-assisted phone interview, compensation is $180
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Eczema: Chronic Hand Eczema caregivers and their adolescent patients ages 12-17 United States
1-2 hour interviews, compensation is $120 per hour
Endometrial Cancer, Ovarian Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer patients United States
45-minute web-assisted phone interview, compensation is $150
Epilepsy: Angelman Syndrome caregivers of children United States
30-minute web-assisted phone interview, compensation is $60
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
Epilepsy: CDKL5 Deficiency Disorder (CDD) caregivers United States
30-minute online survey, compensation is $60
Esophageal Cancer patients United States
30-minute online interview, compensation is $60
Fabry Disease patients United States
30-minute online interview, compensation is $60
Female patients ages 18-50 who have had cosmetic breast augmentation surgery United States
60-minute web-assisted phone interview, compensation is $120
Friedrich’s Ataxia (FA) patients and caregivers of patients ages 16+ United States
30-minute online survey, compensation is $60
Generalized Lipodystrophy (GLD) adult and adolescent patients United States
In-person interview, compensation is $250
Giant Cell Arteritis (GCA) patients United States
60-minute web-assisted phone interview, compensation is $120
Graft Versus Host Disease (GVHD) patients and caregivers United States
60-minute web-assisted phone interview + homework assignment, compensation is $150 for the interview and $25 for the homework assignment
Hearing Loss: Deaf patients United States
20-minute online survey, compensation is $30
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: Pericarditis patients United States
75-minute web-assisted phone interview, compensation is $175
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 ( 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 and caregivers United States
60-minute web-assisted phone interview + 15-minute pre-work task, compensation is $120
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients United States
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients United States
Kidney Disease: IgA Nephropathy (Berger's Disease) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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) caregivers United States
15-minute online survey, compensation is $30
Liver Disease (not hepatitis): Fatty Liver Disease (NAFLD), Liver Disease (not hepatitis): NASH/MASH patients United States
25-minute online survey, compensation is $50
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
15-minute online survey, compensation is $30
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: Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
60-minute interview + 10-minute homework assignment, compensation is $150 for the interview and $50 for the completed homework assignment
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients (Stage IV, Metastatic) United States
Lupus: Cutaneous Lupus, Systemic Lupus Erythematosus (SLE) patients and caregivers United States
25-minute online survey, compensation is $50
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
Menopause female patients ages 55-80 United States
Mucopolysaccharidoses (MPS): MPS IV A (Morquio A Syndrome) patients United States
60-minute web-assisted phone interview, compensation is $120
Mucopolysaccharidoses (MPS) patients United States
60-minute web-assisted phone interview, compensation is $120
Multifocal Motor Neuropathy(MMN) patients United States
30-minute Zoom interview, compensation is $60
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
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
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
Myelofibrosis patients United States
60-minute web-assisted phone interview +15-minute homework assignment, compensation is $150 for the interview and $50 for the homework assignment
Neurofibromatosis (NF): NF1 patients United States
25-minute online survey, compensation is $50
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
Organ Transplant: Kidney patients United States
75-minute web-assisted phone interview, compensation is $150
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Parkinson's Disease (PD) caregivers United States
30-minute survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
Willing to record a doctor visit via an app, compensation is $120
Peyronie's Disease (Penile Fibrosis) male patients and their female caregivers United States
15-minute interview + 20-minute follow-up interview + possible in-person interview if selected, compensation is $30 for the 15-minute interview, $40 for the 20-minute follow-up interview, and $120 for the in-person interview if selected
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
Prostate Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $175
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
30-minute survey, compensation is $60
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 United States
30-minute survey, compensation is $60
Pulmonary Arterial Hypertension (PAH) patients in Columbus, OH, New York City, Tampa, FL United States
75-minute in-person interview, compensation is $190
Pulmonary Arterial Hypertension (PAH) patients who currently use the RemunityPRO Pump United States
30-minute web-assisted phone interview, compensation is $50
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
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
Sinusitis: Rhinosinusitis patients United States
60-minute web-assisted phone interview, compensation is $120
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
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
Vision Impairment: Stargardt Disease patients and 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
Gastroesophageal Junction Cancer (GOJ) (Oesophago Gastric Junctional), Stomach (Gastric) Cancer patients and caregivers Canada
90-minute web-assisted phone interview, compensation is $220 USD
Hemophilia A patients and caregivers Canada
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Canada
Clinical Trial
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Canada
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
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
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients United Kingdom
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
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients France
Myasthenia Gravis (MG) patients France
30-40 minute online survey, compensation is 50 Euros
Neurofibromatosis (NF) patients and caregivers France
60-minute web-assisted phone interview + a pretask assignment, compensation is 120 EUR for the interview and 30 EUR for the pretask assignment
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
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
Neurofibromatosis (NF) patients and caregivers Germany
60-minute web-assisted phone interview + a pretask assignment, compensation is 120 EUR for the interview and 30 EUR for the pretask assignment
Pancreatic Cancer patients Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Italy
Myasthenia Gravis (MG) patients Italy
30-40 minute online survey, compensation is 50 Euros
Neurofibromatosis (NF) patients and caregivers Italy
60-minute web-assisted phone interview + a pretask assignment, compensation is 120 EUR for the interview and 30 EUR for the pretask assignment
Spain
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Spain
Neurofibromatosis (NF) patients and caregivers Spain
60-minute web-assisted phone interview + a pretask assignment, compensation is 120 EUR for the interview and 30 EUR for the pretask assignment
Australia
Heart Disease female patients Australia
90-minute focus group, compensation is 300 AUD
High Cholesterol ( Hypertriglyceridemia ): High Triglycerides patients Australia
Clinical Trial
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients Australia
New Zealand
Interstitial Lung Disease (ILD), Pulmonary Fibrosis (PF), Idiopathic Pulmonary Fibrosis (IPF), Progressive Pulmonary Fibrosis (PPF) patients New Zealand
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@
