We currently have over 200 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
Psoriatic Arthritis (PsA) patients United States COM_7265
10-minute survey to join an online community, compensation is a $20 welcome reward electronic gift card by email, plus a $10 monthly reward electronic gift card by email for participating
Pancreatic Cancer patients and caregivers United States M3_7276
45-minute online focus group, compensation is $56
Primary Immunodeficiency (PID) caregivers United States M360_7177 W2
30-minute online survey, compensation is $50
Esophagitis (EOE) patients and caregivers United States TRP_7110
60-75-minute minute web-assisted phone interview, compensation is $100-$125
Sickle Cell Disease caregivers United States JWW_7299
60-minute web-assisted phone interview, compensation is $100
Ulcerative Colitis patients United States OLW_7208
60-minute web-assisted phone interview, compensation is $100
Metastatic Breast Cancer patients (other names for this condition are 'advanced' or 'Stage IV' Breast Cancer) United States MED_6615 W3
15-minute online survey, compensation is $25
Spinal Muscular Atrophy (SMA) patients & caregivers United States ZS_3610 W2 2022
30-minute online survey, compensation is $50
Breast Cancer patients United States HUM_7286
3 days (6-8 hours each day) of in-person interviews (in your home) for those living in Orange County (CA), Chicago (IL), or Tristate area, compensation is $3,350
Hemophilia A patients United States PICH_7086
This is a 5-minute survey for a medical history platform and the compensation is a $50 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Polycythemia Vera (PV) and/or Graft Versus Host Disease (GVHD) patients United States NEON_7270
45-minute web-assisted phone interview, compensation is $75
Lung Cancer and/or Peripheral Artery Disease patients United States GP_7274
60-minute web-assisted phone interview, compensation is $125
Alzheimer's Disease patients United States FIG_7268
60-minute web-assisted phone interview, compensation is $200
Multiple Myeloma non-caucasian patients that are age 55+ United States CTAS_7235
60-minute online focus group sessions with 3-4 sessions throughout the year, compensation is $100 per hour of focus group participation
Kidney Cancer: Renal Cell Carcinoma patients United States LE_7269
90-minute web-assisted phone interview, compensation is $200
Hepatitis C patients United States M360_7243
30-minute online survey, compensation is $50
Colorectal (Colon) Cancer patients United States ZS_7031 W3
60-minute web-assisted phone interview, compensation is $100
Eosinophilic Granulomatosis with Polyangiitis (EGPA) and/or HyperEosinophilic Syndrome (HES) United States LAG_7246
60-minute web-assisted phone interview, plus a 30-minute homework assignment, compensation is $200 after completing both the interview and the homework
Atrial Fibrillation (Afib) patients United States SHG_7237
20-minute online survey, compensation is $35
Multiple Myeloma African American patients and caregivers United States WISE_7198
60-minute web-assisted phone interview, compensation is $100
Ulcerative Colitis male patients ages 18-40 United States M3_7201
60-minute web-assisted phone interview, compensation is $100
Bullous Pemphigoid patients United States GP_7207
75-minute web-assisted phone interview, compensation is $125
Heart Attack patients and caregivers United States CTAS_7199
120-minute focus group plus a 15-minute homework assignment, compensation is $225
X-Linked Hypophosphatemia patients and caregivers United States MI_7155
60-minute web-assisted phone interview, compensation is $100
Epilepsy Absence Seizures patients United States OPEN_6588
60-minute web-assisted phone interview, compensation is $125
Bullous Pemphigoid patients United States OPEN_7119
75-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is $200 ($175 for the interview and homework, $50 for proof of diagnosis)
Mitochondrial Disease patients and caregivers United States JWW_7183
60-minute web-assisted phone interview plus a 45-minute homework assignment, compensation is $175
Non-Small Cell Lung Cancer (NSCLC) non-caucasian patients and caregivers United States CTAS_7102
60-minute web-assisted phone interview, compensation is $100
Bladder Cancer patients United States HEU_7143
Two 45-minute web-assisted phone interviews, compensation is $160 total (for completing both interviews)
Danon Disease patients & caregivers United States ZS_7130
This is a 5-minute survey and there is no compensation
Multiple Myeloma patients undergoing Chimeric antigen receptor (CAR) T-cell therapy United States ZS_6399 W2
30-minute online survey, compensation is $50
Mitochondrial Disease patients and caregivers United States TLS_7083
60-minute web-assisted phone interview, compensation is $100
Myopathy patients United States SHG_7158
60-minute web-assisted phone interview, compensation is $100
Pompe Disease: Infantile Pompe Disease & Late Onset Pompe patients and caregivers United States BSG_7145
60-minute web-assisted phone interview, compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States PICH_4376
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Alzheimer's Disease patients United States PICH_5649
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Lupus Nephritis patients United States PICH_6217
This is a 5-minute survey for a medical history platform and there is no compensation
Immune Thrombocytopenic Purpura (ITP) patients United States PICH_5647
This is a 5-minute survey for a medical history platform and the compensation is a $150 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Alpha 1 Antitrypsin Deficiency patients United States GP_7043
60-minute web-assisted phone interview, compensation is $100
Mucopolysaccharidoses I (MPS I) patients United States ZS_7030
60-minute web-assisted phone interview, compensation is $100
Small Cell Lung Cancer patients United States GP_7020
60-minute web-assisted phone interview, compensation is $100
IgA nephropathy (Berger's Disease) patients United States PICH_7048
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Non-Small Cell Lung Cancer, Renal Cell Carcinoma, or Gastric Cancer patients United States COM_6940
10-minute online survey, compensation is $15
Clostridium Difficile (C Diff) patients and caregivers United States MVR_6906
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Immunoglobulin A Nephropathy (IgAN) patients United States SCH_7010
60-minute web-assisted phone interview, compensation is $175
Infectious Disease study for those that have been diagnosed with one or more of the following conditions: Malaria, Hep B, Covid, long term/advanced Gonorrhea, or Chronic UTI patients United States DYN_7007
75-minute web-assisted phone interview, compensation is $125
Multiple Myeloma patients and caregivers United States HV_6994
60-minute web-assisted phone interview, compensation is $100
Chronic Lymphocytic Leukemia (CLL) patients that have been on the medication Calquence United States BV_7013
100-minute Online Bulletin Board (OBB) (20-minutes per day for 5 days) plus a 45-minute follow up web-assisted phone interview, compensation is $170 for the OBB, and $75 for the interview
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States GP_6974
60-minute web-assisted phone interview, compensation is $100
Glaucoma patients United States SHG_6976
60-minute web-assisted phone interview, compensation is $120
Huntington's Disease patients United States PICH_6842
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Aromatic L-amino Acid Decarboxylase Deficiency (AADC) caregivers United States ZS_6655
60-minute web-assisted phone interview, compensation is $100
End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD) patients and caregivers United States HFCS_6701
In-person interviews for those living near Manchester NH, two week long study consisting of approximately 35 hours on site in NH, compensation is $2000 for patients and $1500 for caregivers
Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma patients United States GP_6473
90-minute web-assisted phone interview (or two 45 min interviews if the patient prefers), compensation is $210
Thyroid Eye Disease (TED) male patients United States 21G_6335
Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks
Amyotrophic Lateral Sclerosis (ALS) patients & caregivers United States PICH_5650
5-10-minute online survey for medical history platform, compensation is $25
Pompe Disease patients United States PICH_5652
5-minuteonline survey for medical history platform, compensation is $20
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50
United States Clinical Trials:
Caregivers of unvaccinated (COVID-19) children ages 1-5 United States IFMA_7323
Clinical Trial and compensation will be discussed with those that are selected to participate
Myelofibrosis adult patients United States IFMA_7104
Clinical Trial and compensation will be discussed with those that are selected to participate
Hodgkin's Lymphoma patients United States TRLS_5328
Clinical Trial and compensation will be discussed with those that are selected to participate
Non-Hodgkin's Lymphoma patients United States IFMA_6498
Clinical Trial and compensation will be discussed with those that are selected to participate
Melanoma, Lung Cancer: Non -Small Cell Lung Cancer (NSCLC) patients United States IFMA_6930
Clinical Trial and compensation will be discussed with those that are selected to participate
Cancer patients United States MBO_6923
Clinical Trial and compensation will be discussed with those that are selected to participate
Myelofibrosis patients United States MBO_6480
Clinical Trial and Compensation will be discussed with those that are selected to participate
Respiratory Syncytial Virus (RSV) patients United States IFMA_6453
The total length of participation in this clinical trial is approximately 2 years (25 months). It includes up to 8 trial visits and 26 brief communications (via telephone, email, or text message) participants will be compensated for their time
Cytomegalovirus (CMV) United States IFMA_6311
18-month long Clinical Trial and Compensation will be discussed with those that are selected to participate
Click here for more clinical trial opportunities!
United Kingdom
Hemophilia (Moderate) patients and caregivers United Kingdom TIS_7045
60-minute web-assisted phone interview, compensation is $130 (130 US dollars)
Canada
Alzheimer's, Memory Loss, or Dementia patients and caregivers Canada LOGR_7236
75-minute web-assisted phone interview, plus 20-minute homework assignment, compensation is 200 CAD upon completion of both the interview and the homework.
Alzheimer's Disease, Memory Loss, Dementia caregivers (the patient will also be included in this interview) Canada LOGR_7236
75-minute web-assisted phone interview (both the caregiver and patient must be present), plus a 20-minute homework assignment, compensation is $160 (total)
Acute Lymphoblastic Leukemia (ALL), Beta-Thalassemia (TDT) or Multiple Myeloma (MM) patients and caregivers Canada ZS_6655
60-minute web-assisted phone interview, compensation is $100 (USD)
Spinal Muscular Atrophy (type 1) patients and caregivers Canada ZS_6655
60-minute web-assisted phone interview, compensation is $100 (USD)
Non-Hodgkins Lymphoma (DLBCL, FL3B, MCL, PMBCL) patients and caregivers Canada ZS_6655
60-minute web-assisted phone interview, compensation is $100 (USD)
Retinitis Pigmentosa Leber’s or Congenital Amaurosis patients and caregivers Canada ZS_6655
60-minute web-assisted phone interview, compensation is $100 (USD)
Chronic Lymphocytic Leukemia patients and caregivers Canada QUR_6705
90-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is CAD 240
France
More studies coming soon!
Germany
Type 2 Diabetes or Heart Failure or Chronic Kidney Disease patients Germany GLG_7134
60-minute web-assisted phone interview, compensation is 100 EUR
IgA Nephropathy (Berger's Disease), Complement 3 Glomerulopathy (C3G), Atypical Hemolytic Uremic Syndrome (aHUS) patients Germany M3_7049
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
More studies coming soon!
Spain
More studies coming soon!
Australia
Psoriasis: Plaque or Psoriatic Arthritis (PsA) patients Australia KPD_7306
20-minute online survey, compensation is 50 AUD
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 opportunities and help move science forward today.
Please contact study.inquiries@
