What's New at Rare Patient Voice?
Study Results
Rare Patient Voice recently conducted a survey of 369 patients and family caregivers in the UK to see how they felt about participating in market research. Most had participated in online surveys (82%), followed by online interviews (45%) and focus groups (23%), and had a positive experience across all methodologies. Patients and family caregivers choose to participate in research for a variety of reasons:
- To assist with research for the development of future treatments and cures for future patients (86%)
- To help with research for my disease in hopes of improving my own condition (80%)
- Opportunity to share experiences (70%)
- Opportunity to express opinions (63%)
- To learn about potential new treatments and products (62%)
Privacy and data security were noted as the biggest concern when participating in research (40%). Convenience was rated as the top factor encouraging participation in research (82%) and the majority of respondents preferred to be contacted about research via email (98%).
Didn’t Qualify for a Study? We Still Value Your Time
We appreciate your participation and being part of the RPV community, even if you didn'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, Amber!
Partner Corner
The Children’s Diabetes Foundation was established by Barbara and Marvin Davis in 1977 in Denver as a non-profit organization dedicated solely to the support of research in diabetes and to provide the best possible clinical and educational programs for people with the disease. The Foundation’s mission is to raise funds to support the Barbara Davis Center for Diabetes, where thousands of patients of all ages from all over the world receive the finest diabetes care available. For more information, visit: https://childrensdiabetesfoundation.org/
Referrals
Would you be interested in becoming a valued referral partner by promoting Rare Patient Voice and encouraging others to participate in research? As a referral partner, you play a pivotal role in recruiting patients and family caregivers to participate in all types of research studies. For each successful referral who signs up through your referral link, you will be eligible to receive compensation of $10 USD. Click here for more information and to sign up to be an RPV referral partner.
Share Your Voice Via Video!
If you’re part of the RPV community and enjoy participating in research studies, let us know! Join the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. To thank you for recording a video, we will send you a $10 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan the code below with the camera app from your Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
Staff Spotlight
Madeline Nylen joined the Rare Patient Voice field operations team in 2023 as a scheduler. She earned a BS in Accounting from the University of North Alabama and currently resides in Tallahassee, FL. Madeline is happy to work for a company that empowers patients and family caregivers to have their opinions and experiences heard.
“Working at RPV, I am most proud of the work that we do. No matter how small it is, collectively, with the patients and caregivers, we are making a difference!”
Madeline and her husband welcomed a new addition to their family earlier this year, a daughter named Simmons, their first. A beach lover, Madeline also enjoys traveling, reading, and spending time with her family and friends as well as her dogs, Houser and Boomer.
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
Adolescents ages 16-17 with Achondroplasia and family members caring for those aged 10-17 in the United States
120-minute in-person interview, compensation is $565 to $835
Adolescents with Achondroplasia and their family members in the United States
This is a 5-minute survey for a medical history platform.
Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States
60-minute in-person interview, compensation is $150/patient and $150/caregiver
Atopic Dermatitis patients currently taking or who have previously taken Adbry, Cibinqo, or Rinvoq United States
60-minute web-assisted phone interview, compensation is $125
Beta Thalassemia caregivers of patients ages 12-35 United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia adult patients ages 18-35 and caregivers of young adult patients 18-25 United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $145
Catheter User patients in the Philadelphia, PA area United States
90-minute in-person interview, compensation is $270
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients ages 18-75 United States
30-minute web-assisted phone interview, compensation is $100
Chronic Kidney Disease with Cardiovascular Disease patients ages 35-75 and caregivers of patients ages 35-75 United States
Either 140 minutes/2 Interviews and a Diary or a a 90 minute duo Interview, compensation is $275 for 2 interviews and diary or $150 for the duo interview
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
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, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PA United States
75-minute in-person interviews, compensation is $225
Crohn's Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Crohn’s Disease, Ulcerative Colitis patients United States
15-minute online survey, compensation is $30
Dermatomyositis, Neuromyelitis Optica (NMO), Polymyositis patients and caregivers in California, Florida, Illinois, North Carolina, Texas, Wisconsin United States
60-minute in-person interview, compensation is $180
Desmoid Tumor patients United States
45-minute online survey, compensation is $90
Diffuse Systemic Scleroderma patients United States
90-minute web-assisted phone interview, compensation is $250
Epilepsy male patients and caregivers of children ages 12-17 United States
60-minute web-assisted phone interview plus a 20-minute pretask assignment, compensation is $120 for the interview and $40 for the pretask assignment
Exocrine Pancreatic Insufficiency patients United States
10-minute online survey, compensation is $30
Gastric Cancer, Stomach Cancer, or Vitiligo patients United States
90-minute focus group, compensation is $150
Generalized Myasthenia Gravis patients and caregivers in Boston, MA; Chicago, IL; Dallas, TX; Orlando, FL; Phoenix, AZ; Portland, OR; Seattle, WA; Tampa, FL United States
60-minute in-person interview, compensation is $180 for caregivers and $200 for patients with confirmation of diagnosis
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview
Head and Neck Cancer patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hemophilia patients United States
15-minute online survey, compensation is $30
Hereditary Angioedema (HAE) caregivers United States
60-minute Zoom web-assisted phone interview, compensation is $120
HIV patients United States
25-minute online survey, compensation is $50
IgA Nephropathy (Bergers Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
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
Interstitial Lung Disease (ILD) or Pulmonary Fibrosis (PF) male patients United States
Two 60-minute web-assisted phone interviews plus confirmation of diagnosis, compensation is $95 per interview and $50 for confirmation of diagnosis
Migraine patients United States
Online surveys over a 6-10 week period, compensation is $325 to $585
Multiple Myeloma (MM), Non-Small Cell Lung Cancer (NSCLC), or Prostate Cancer patients United States
20-minute online survey, compensation is $40
Multiple Myeloma patients United States
45-60 minute web-assisted phone interview, compensation is $90-$120
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Multiple Sclerosis patients United States
120-minute focus group, compensation is $240
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy patients United States
30-minute online survey, compensation is $60
Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
25-minute online survey, compensation is $50
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute online bulletin board, compensation is $120
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
20-minute online survey, compensation is $40
Prostate Cancer caregivers United States
30-minute online survey, compensation is $60
Prurigo Nodularis (PN) patients United States
300-minute in-person interview, compensation is $500
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 taking Uzedy United States
60-minute web-assisted phone interview (webcam required), compensation is $100
Sickle Cell Disease caregivers of patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Sjogren's Syndrome (SjS, SS) or Systemic Lupus Erythematosus (SLE) patients in Philadelphia or New York City United States
75-minute in-person interview, compensation is $150
Stomach (Gastric) Cancer Stage IV patients and caregivers United States
90-minute web-assisted phone interview, compensation is $250
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
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Von Willebrand Disease Type 3 caregivers of children ages 12-17 United States
75-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $190
United Kingdom
Multiple Sclerosis patients United Kingdom
120-minute focus group, compensation is 190 GBP
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
Canada
Feeding Tube patients age 50+ Canada
60-minute web-assisted phone interview, compensation is $120 USD/$160 CAD
Leukemia, Lymphoma, Multiple Myeloma (MM) patients with CAR-T experience and caregivers of patients with CAR-T experience Canada
60-minute web-assisted phone interview via Zoom, compensation is $240 CAD
Multiple Sclerosis patients Canada
120-minute focus group, compensation is 320 CAN
Ovarian Cancer patients Canada
60-minute web-assisted phone interview, compensation is 80 CAD
Germany
Multiple Myeloma patients Germany
45-60 minute web-assisted phone interview, compensation is €85-110
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
Multiple Sclerosis patients Australia
120-minute focus group, compensation is 360 AUS
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?
You will earn $120 per hour (typically) for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
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.
