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
Achondroplasia caregivers of children ages 4-17 United States
45-minute online survey, compensation is $100
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, Vitiligo patients United States
60-minute web-assisted phone interview, compensation is $120
Alpha 1 Antitrypsin Deficiency (A1AD) patients United States
60-minute web-assisted phone interview, compensation is $120
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers United States
60-minute online interview, compensation is $120
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
30 or 45 minute interview, compensation is $60 for the 30-minute interview and $90 for the 45-minute interview
Ankylosing Spondylitis (AS), Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Juvenile Arthritis (JA): Juvenile Rheumatoid Arthritis (JRA), Psoriasis: Plaque, Psoriatic Arthritis (PsA) caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Asthma, Eczema (Atopic Dermatitis), Perennial Allergic Rhinitis caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Atopic Dermatitis (Eczema) caregivers of children under 2 United States
60-minute web-assisted phone interview, compensation is $120
Atopic Dermatitis (Eczema) caregivers of patients ages 12-22 United States
60-minute web-assisted phone interview + homework assignment and video diary, compensation is $120 for the interview and TBD for homework and online diary
Atopic Dermatitis (Eczema) patients and caregivers of patients ages 12+ 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
Bipolar 1 or Schizophrenia patients who currently or have used an injectable treatment United States
60-minute web-assisted phone interview plus a 20-minute homework assignment, compensation is $150 for the interview and $50 for the homework assignment
Bladder Cancer: Muscle-Invasive Bladder Cancer (MIBC) patients United States
60-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $100 for the interview and $80 for confirmation of diagnosis (paid via egift card)
Breast Cancer (BC): Metastatic patients (Stage IV) United States
25-minute survey, compensation is $50
Breast Cancer (BC): Metastatic Stage IV patients United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer (BC) patients United States
30-35 minute online survey, compensation is $60
Breast Cancer patients United States
5-minute online survey, compensation is access to a medical record collection service
Breast Cancer (BC) 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
Cancer patients United States
30-minute survey, compensation is $60
Cancer (excluding Breast Cancer) non-caucasian male patients United States
20-minute online survey, compensation is $40
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) male patients United States
Medical record service sign up, compensation is $75 for the initial signup
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
Cluster Headache: Episodic, Migraine: Chronic caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
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
Crohn's Disease (CD) patients United States
3-year participation study, compensation based on tasks
Crohn's Disease (CD), Ulcerative Colitis (UC) caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Depression male patients ages 21-65 available to travel (within the US) United States
60-minute web-assisted phone interview, compensation is $120
Diabetes (DM): Type 1, Diabetes (DM): Type 2, Obesity, Weight Management caregivers of adolescents ages 10-17 United States
60-minute in-person interview in Tampa, FL; Braintree, MA; Raleigh, NC; Cincinnati, OH; Columbus, OH, Bala Cynwyd, PA United States, compensation is a $180 Electronic Visa Gift Card
Eczema (Atopic Dermatitis), Prurigo Nodularis (PN) adult patients ages 18+ United States
120-minute online bulletin board, compensation is $240
Endometrial Cancer, Liver Cancer, Renal Cell Carcinoma (Kidney Cancer, RCC), Thyroid Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Esophageal Cancer, Head and Neck 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
Growth Hormone Disorder (GHD) patients and caregivers in Chicago (IL), Columbus (OH), New York City (NY), Orlando (FL), Tampa (FL) United States
120-minute in-person interview, compensation is $360 for adult patients/caregivers and $385 for adolescent patients
Head & Neck Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Heart Disease: Cardiomyopathy patients United States
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
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
HER2 Positive Cancer patients United States
60-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Hereditary Hemorrhagic Telangiectasia (HHT) patients and caregivers United States
75-minute online survey + a 20-minute homework assignment, compensation is $200
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
Hot Flashes and Vasomotor Symptoms (VMS) Hispanic Female patients United States
60-minute web-assisted phone interview, compensation is $120
Human Growth Hormone Deficiency (GHD) adult patients ages 18+ and caregivers of children ages 1-18 United States
120-minute online bulletin board, compensation is $240
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
Hypoparathyroidism patients United States
60-minute web-assisted phone interview, compensation is $150
IgA Nephropathy (Berger's Disease) patients United States</strong
5 minute online Survey
Juvenile Arthritis (JA): Juvenile Idiopathic Arthritis (JIA), Juvenile Psoriatic Arthritis, Pediatric Psoriasis caregivers of children ages 2-18 United States
120-minute online bulletin board, compensation is $240
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
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) and Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients United States
10-minute online survey, compensation is $25
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
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 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
Melanoma patients and caregivers United States
30-minute online interview, compensation is $60
Migraine patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma (MM) patients and caregivers 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 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
Myopathy patients United States
15-minute online survey, compensation is $30
Neuroendocrine Cancer (NET) (Carcinoid Cancer) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Niemann-Pick Disease patients and caregivers United States
In-person interviews
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
Ovarian Cancer patients and caregivers United States
60-minute pre-interview + 60-minute web-assisted phone interview, compensation is $120 per interview
Overactive Bladder (OAB) patients who have a nerve implant 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
Progressive Supranuclear Palsy (PSP) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients United States
75-minute web-assisted phone interview, compensation is $150
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 who are taking Treprostinil United States
45-minute web-assisted phone interview, compensation is $90
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 United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the 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
Ulcerative Colitis (UC) patients United States
30-minute online survey, compensation is $50
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
VEXAS Syndrome patients United States
Vitiligo patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Canada
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers Canada
60-minute online interview, compensation is 165 CAD
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
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 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
Obesity patients United Kingdom
We are currently looking to connect with individuals diagnosed with obesity.
France
Obesity patients Spain
We are currently looking to connect with individuals diagnosed with obesity.
Germany
Alpha 1 Antitrypsin Deficiency (A1AD) patients and caregivers Germany
60-minute online interview, compensation is 105 EURO
High Triglycerides (Hypertriglyceridemia) patients Germany
45-minute web-assisted phone interview, compensation is 55 Euros
Obesity patients Germany
We are currently looking to connect with individuals diagnosed with obesity.
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@
