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
Acromegaly patients United States
60-minute web-assisted phone interview, compensation is $125
Alopecia Areata, Vitiligo patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alpha-Mannosidosis (AM) caregivers United States
Compensation is $125
Anemia, Coronavirus (COVID-19): Long Hauler, Lupus: Lupus Nephritis (LN), Lupus: Systemic Lupus Erythematosus (SLE) caregivers of patients ages 12-17 and patients ages 16-17 in Connecticut, Illinois, Indiana, New Jersey, New York, Texas, and Wisconsin United States
In-person interviews, compensation is $250 for the caregiver and $350 for the adolescent patient
Bladder Cancer, Cervical Cancer, Endometrial Cancer, Ovarian Cancer, Uterine Cancer, Vaginal Cancer, Vulvar Cancer patients United States, 150-minute online journal plus a 60-minute web-assisted phone interview, compensation is $300 for the online diary and $120 for the interview
Bladder Cancer patients in the Philadelphia, PA area United States
90-minute in-person interview, compensation is $165
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Breast Cancer (BC) patients United States
30-minute web-assisted phone interview, compensation is $60
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Cervical Cancer, Endometrial Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Stomach (Gastric) Cancer patients United States
45-minute web-assisted phone interview, compensation is $90
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
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 video shoot project, compensation varies based on involvement
Crohn's Disease (CD), Ulcerative Colitis (UC) patients who use Omvoh United States
60-minute web-assisted phone interview, compensation is $120
Cushing's Syndrome (Hypercortisolism) patients United States
30-minute online survey, compensation is $60
Dravet Syndrome caregivers United States
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy: Focal Seizures (Partial Seizures) patients United States
60-minute web-assisted phone interview plus a 15-minute online survey, compensation is $160
Friedreich's Ataxia (FA) patients United States
Type of interview varies, compensation based on involvement/type of interview
Graft Versus Host Disease (GVHD) patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment to be completed prior to interview, compensation is $125 for the interview and $25 for the homework assignment
Grave's Disease (GD) and Thyroid Eye Disease (TED) patients (must have both) United States
Heart Disease, High Cholesterol Asian, Native Hawaiian, or Pacific Islander patients United States
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
120-minute web-assisted phone interview, compensation is $120
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients and caregivers United States
30-minute online survey, compensation is $60
Hemophilia A patient under age 70 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90
Hepatitis: Hepatitis C (Hep C) Non-Caucasian male patients ages 18-55 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hypophosphatasia (HPP) caregivers United States
Hypophosphatasia (HPP) patients United States
20-minute pre-interview online survey plus in-home interview (up to an hour), compensation is $40 for the survey and $180 for the in-home interview
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Kidney Disease: Chronic Kidney Disease (CKD), Kidney Disease: Complement-3 Glomerulopathy, Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS), Kidney Disease: Glomerulonephritis, Kidney Disease: IgA Nephropathy (Berger's Disease), Lipoid Nephrosis (Minimal Change Disease), Kidney Disease: Nephrotic Syndrome caregivers of patients ages 12-17 and patients ages 16-17 in Connecticut, Illinois, Indiana, New Jersey, New York, Texas, and Wisconsin United States
In-person interviews, compensation is $250 for the caregiver and $350 for the adolescent patient
Kidney Disease: Chronic Kidney Disease (CKD) adult patients under age 65 in the Boston area, Kidney Disease: IgA Nephropathy (Berger's Disease) patients in the Boston and Chicago areas United States
60-minute in-person interview, compensation is $180
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 United States
20-minute online survey, compensation is $40
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
150-minute online journal plus a 60-minute web-assisted phone interview, compensation is $300 for the online diary and $120 for the interview
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-mintue online survey, compensation is $60
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
20-minute online survey, compensation is $40
Multiple Sclerosis (MS): Primary Progressive MS (PPMS) caregivers United States
60-minute web-assisted phone interview, compensation is $125
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers United States
25-minute online survey, compensation is $50
Myelofibrosis (MF) patients United States
25-minute online survey, compensation is $50
Myelofibrosis patients United States
Year long advisory boards (4 sessions), compensation is $150
Narcolepsy: Type 1 With Cataplexy patients United States
35-minute online survey, compensation is $70
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients United States
5-minute online survey, compensation is $25
Obstructive Hypertrophic Cardiomyopathy (oHCM) patients and caregivers United States
Osteoporosis female patients in Chicago, IL United States
90-minute in-home interview, compensation is $375
Osteoporosis Hispanic patients ages 55 and older United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $250
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Phenylketonuria (PKU) patients ages 12-17 and caregivers of patients United States
30-minute training session plus 90-minute in-person interview over 2 days April 28th-June 8th, compensation is $525 plus travel incentives if applicable.
Phenylketonuria (PKU) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $60
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients ages 40-80 and caregivers United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $25 for the homework
Psoriatic Arthritis patients United States
60-minute web-assisted phone interview, compensation is $120
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients United States
30-minute online survey, compensation is $60
Stomach (Gastric) Cancer patients and caregivers United States
30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Warm Autoimmune Hemolytic Anemia (WAIHA) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Vision Impairment patients in Chicago (IL), Denver (CO), Houston (TX), Philadelphia (PA) United States
60-minute in-person interview, compensation is $180
Vision Impairment: Retinal Vein Occlusion patients ages 40-65 United States
90-minute online bulletin board plus a follow up 60-minute web-assisted phone interview, compensation is $180 for the online bulletin board and $120 for the interview
Vision Impairment: Retinitis Pigmentosa patients United States
60-minute web-assisted phone interview, compensation is $120
Vision Impairment: Stargardt Disease patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Canada
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
United Kingdom
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Hereditary Angioedema (HAE) patients United Kingdom
45-minute web-assisted phone interview or 30-minute online survey, compensation is 70 GBP for the interview and 50 GBP for the survey
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
France
Bladder Cancer patients and caregivers France
45-minute web-assisted phone interview, compensation is 85 Euros
Germany
Bladder Cancer patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 85 Euros
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
More studies coming soon!
Spain
More studies coming soon!
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
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@
