What's New at Rare Patient Voice?
Study Results
What would make taking part in clinical trials of greater interest to patients? Getting reimbursed for meals and travel and being paid for participation top the list.
In September 2022, Rare Patient Voice conducted a survey of 1,989 patients and family caregivers in the United States on clinical trials and what might make the clinical research process more appealing. Findings were presented and discussed at the Rare Disease Innovation & Partnering Summit on March 22, 2023 in Philadelphia, PA, by Wes Michael, President of Rare Patient Voice, and Richie Kahn, patient advocate and clinical research expert with Canary Advisors LLC. Click here to read the report.
We Value Your Time
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Ingrid!
Partner Corner
The Melanoma Action Coalition (MAC) is a group of community-based melanoma foundations and individuals from across North America, working together to share information and provide mutual support. While valuing and preserving the unique mission of each of our member organizations, we are combining our voices in ways that make us more effective advocates for melanoma awareness, education, prevention, and research.
Learn more: https://www.melanomaactioncoalition.org/
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Christina Cooper, Project Scheduler for Rare Patient Voice.
Christina began working for Rare Patient Voice as a Project Scheduler in 2022. She joined the RPV team because she is passionate about helping people and making a difference in the world, and her favorite part of job is interacting with the patients and family caregivers who participate in our studies.
“I am blessed to learn about their lives and experiences, the adversity and hardships they face, and how they conquer and persevere. Every day I’m inspired by their stories, which are full of hope and love. I’m honored to be able to help with whatever is needed, whether it is scheduling, assisting with assignments, or just lending an ear.”
On the homefront, Christina has three teenagers, Andrew, Alexis, and David, who keep her on her toes! Her hobbies include planning educational trips for her kids, collecting thimbles and magnets, and training Parker, the family’s Black Labrador who is named after Spiderman’s alter ego.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com
2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who might be interested!
United States
Achondroplasia caregivers (children between the ages of 12-20) United States
60-minute web-assisted phone interview, compensation is $125
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Alzheimer’s caregivers United States
2 10-minute online surveys that are 7 days apart, compensation $50
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)
Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia) (patients who do not receive regular transfusions as part of their medical treatment and must be able to provide proof of diagnosis) United States
60-90 minute web-assisted phone interview, compensation $75 for confirmation of diagnosis + $125 for interview
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $120
Bladder Cancer patients United States
60-minute web-assisted phone interview (plus a 30-minute homework assignment), compensation is $170
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Cervical Dystonia or Spasticity patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
45-minute web-assisted phone interview + Confirmation of Diagnosis(COD), compensation $122.50
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Myasthenia Gravis, Myopathy patients (in the Chicago area) United States
75-minute in-person interview $175
Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $120
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
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Cytomegalovirus (CMV) patients and caregiver United States
60-minute web-assisted phone interview (WATI), compensation is $120
Depression male non-caucasian patients United States
60-minute web-assisted phone interview, compensation is $120
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Gestational Diabetes patients United States
30-minute web-assisted phone interview, compensation is $60
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)
Hemophilia A & B patients United States
75-minute web-assisted phone interview, compensation is $150
Hemophilia B patients United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
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
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Immune Thrombocytopenic Purpura (ITP) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Limb Girdle Muscular Dystrophy (LGMD) patients United States
60-minute web-assisted phone interviews, compensation is $100
Metastatic Breast Cancer patients United States
15-minute online survey, compensation is $30
Neuroendocrine Cancer (NET) or Prostate Cancer patients United States
20-minute online survey, compensation is $40
Neurofibromatosis patients 25+ years and family caregivers of patients 18-25 years United States
60-minute web-assisted phone interview (WATI), compensation is $120
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
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)
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Prostate Cancer patients United States
60-minute web-assisted phone interviews, compensation is $150
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Vitiligo adolescent patients with their caregivers in a joint interview United States
60-minute interview $120 per person
Vitiligo patients United States
60-minute web-assisted phone interview, compensation is $120
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
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
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
IgA Nephropathy (Berger's Disease) or Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Germany
60-minute web-assisted phone interview, compensation is 115 EUR
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
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
As of January 1, 2023, you will earn $120 per hour for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $10 million dollars since 2013 for participating in research studies.
