As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.
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
Idiopathic Pulmonary Fibrosis (IPF) patients United States
30-minute online survey; Compensation $50
Hereditary Angioedema (HAE) patients United States
60-minute web-assisted phone interview, compensation is $175
Desmoid tumor patients United States
25-minute online survey, compensation is $50
Asthma caregivers of children aged 1-17 with NO insurance United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Arterial Hypertension (PAH) male patients with right-heart catheterization United States
60-minute web-assisted phone interview with confirmation of diagnosis (COD), compensation is $230 for interview + COD
Bladder Cancer patients and caregivers to patients who have been/currently taking Padcev and/or Trodelvy United States
60-minute web-assisted phone interview, compensation is $120
Melanoma patients United States
90-minute web-assisted phone interview (plus a 15-minute homework assignment) as well as a 90-minute online bulletin board (3 days/30-minutes per day), compensation is $250 for the interview and $250 for the online bulletin board
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Postpartum Depression (PPD) patients United States
75-minute web-assisted phone interview, compensation is $150
Juvenile Rheumatoid Arthritis, Lupus, Hematological Cancer or Solid Tumor, Cystic Fibrosis, Asthma, Obesity, Cerebral Palsy (CP), Down Syndrome (DS), Sickle Cell Disease (SCD), Congenital Heart Disease, Arrhythmia, Kawasaki disease (KD) caregivers of patients aged 0-12 United States
20-minute online survey, compensation is $35
Early-stage Breast Cancer female patients that have clinical trial experience and male patients with clinical trial experience and a diagnosis of any chronic condition United States
60-minute web-assisted phone interview, compensation is $125
Head & Neck Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Psoriasis patients aged 18-45 United States
15-minute pre-call, 90-minute pre-work, 60-minute in-depth interview, compensation is $225 upon completion of all
Kidney Disease (End Stage Renal Disease, Chronic Kidney Disease) patients and caregivers United States
90-minute web-assisted phone interview plus a 30-minute online diary and a 30-minute follow up interview, compensation is $112.50 per participant (patients and caregivers are to be interviewed at the same time together)
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Chronic Kidney Disease with Peripheral Artery Disease patients and caregivers United States
60-minute web-assisted phone interveiw plus a 30-minute homework assignment, compensation is $150
Amyloidosis patients and caregivers United States
Two in-person interviews (45-minutes on day one, and 60-minutes on day two), total compensation is $400
Progressive fibrosing interstitial lung disease (PF-ILD) patients currently on anti-fibrotics United States
40-minute web-assisted phone interview, plus a 50-minute homework assignment, compensation is $70 for the interview and $85 for the homework
Immune Thrombocytopenic Purpura (ITP) patients United States
90-minute web-assisted phone interview, compensation is $150
Urticaria: Chronic Spontaneous patients United States
60-minute web-assisted phone interview, compensation is $100
Urticaria (Hives):Chronic Spontaneous patients aged 16 & 17 United States
90-minute web-assisted phone interview, compensation is $200
Prostate Cancer patients and caregivers United States
2.5-hour video focus group, compensation is $275
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Pulmonary Arterial Hypertension (PAH) patients United States
120-minute focus group, compensation is $200
Pulmonary Arterial Hypertension (PAH) Male patients age 16+, and Male caregivers of patients ages 1-17, who are non-Caucasian United States
There will be a preliminary 20-30-minute telephone interview; If you are not selected for focus group sessions, you will be paid $35 for the preliminary interview. If you are accepted into the focus group you will participate in 1-2-hour focus group sessions with 3-4 sessions throughout the year, compensation for the focus group is $100 per hour.
Lung Cancer patients United States
2.5 hour online journal (with possible opportunities to have follow-up interviews for additional compensation), compensation for the online journal is $335
Diffuse Large B-Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma patients and caregivers aged 40+ United States
60-minute web-assisted phone interview, compensation is $100
Chronic kidney disease (CKD) patients that have been also diagnosed with anemia United States
60-minute phone interview, compensation is $100
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
Prostate Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Amyotrophic Lateral Sclerosis (ALS) patients who were recently diagnosed and/or those who noticed symptoms within the last 4.5 years United States
60-minute web-assisted phone interview, compensation is $175
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Congestive and/or Chronic Heart Failure patients and caregivers that are age 18+ United States
20-minute online survey, compensation is $35
Myasthenia Gravis patients United States
5-minute online survey for medical history platform, compensation is $25
Polycythemia Vera (PV) patients United States
In-person interview located in Chicago (IL), compensation is $720 (plus travel, meal and hotel reimbursement when applicable)
Primary Immunodeficiency (PID) caregivers United States
30-minute online survey, compensation is $50
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 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
45-minute web-assisted phone interview, compensation is $75
Multiple Myeloma African American patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
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
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
This is a 5-minute survey for a medical history platform and there is no compensation
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
IgA nephropathy (Berger's Disease) patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Clostridium Difficile (C Diff) patients and caregivers United States
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
60-minute web-assisted phone interview, compensation is $175
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $100
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Urinary Tract Infection (UTI) patients age 60+ United States
30-minute web-assisted phone interview, compensation is $80
Pompe Disease patients United States
5-minute online survey for medical history platform, compensation is $20
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
United Kingdom
More studies coming soon!
Canada
More studies coming soon!
France
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients France
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Germany
Fragile X Syndrome patients and caregivers Germany
75-minute web-assisted phone interview, compensation is EUR 200
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Germany
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Italy
More studies coming soon!
Spain
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Spain
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
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@
