What's New at Rare Patient Voice?
Study Results
The valuable time of patients and their loved ones and the burden of traveling to clinical trial sites needs to be taken into consideration by researchers, according to a late 2022 Rare Patient Voice study. RPV surveyed 1,989 patients and family caregivers on factors that would make taking part in clinical trials more appealing.
- 95% rated compensation as moderately to extremely appealing.
- 93% said having help making travel arrangements would be moderately to extremely appealing.
- 97% responded that being reimbursed for meals and travel expenses would be moderately to extremely appealing.
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, Stavroula!
Partner Corner
Luisa Leal, an immigrant mother of two daughters, one with a disease in her right eye and the other born with a congenital anomaly, witnessed how difficult it was to navigate the medical system due to language barriers and legal documentation. She met a family with twin boys diagnosed with Duchenne Muscular Dystrophy, and, noticing the lack of information in Spanish about rare diseases and the lack of support for immigrant Hispanic families in the United States, set out to find better possibilities for the children. The Akari Foundation was then created.
The Akari Foundation’s goal is to create communication links with other families and share information about available resources, advocacy, and education. To that, the Foundation has created a website 100% in Spanish specialized in Duchenne Muscular Dystrophy.
For more information, visit www.theakarifoundation.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 Felecia Bryant, Project Manager for Rare Patient Voice.
Hailing from Alabama, Felecia joined Rare Patient Voice in 2019 and is now a Project Manager with the company. She feels strongly that her personal experience helps her to better meet the needs of the patients and family caregivers taking part in research studies with understanding and care.
“My favorite part of working for RPV is knowing that the research we are doing is helping others. As a cancer survivor and someone living with a chronic disease, I know how important this research is,” Felecia shares. “I also enjoy making connections with clients and members of our panel. I just love knowing that we are making a difference and giving a little extra spending money to people for taking part in studies. I’m thankful for the opportunity to be a part of such a wonderful community.”
Felecia’s hobbies include traveling, family adventures, crafting, and photography.
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
Melanoma, Cutaneous Squamous Cell Carcinoma patients and caregivers United States
60-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $120 + $30
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
45-minute web-assisted phone interview + Confirmation of Diagnosis(COD), compensation $122.50
Hidradenitis Suppurativa (HS) patients United States
60-minute web-assisted phone interview, compensation is $120
Hyperkalemia patients United States
90-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $210
Eczema (Atopic Dermatitis) caregiver United States
60-minute web-assisted phone interview, compensation is $120
Prurigo Nodularis (PN) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Attention Deficit Hyperactivity Disorder (ADHD, ADD) caregivers of children 4-8 years old United States
90-minute web-assisted phone interview, compensation is $200
Neuromyelitis Optica (NMO), Thyroid eye Disease (TED), Gout patients United States
10-minute online survey, compensation is $25
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
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
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)
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
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
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 (typically) 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 $13 million dollars since 2013 for participating in research studies.
