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by Chris Durst June 8, 2024
Please note that this is an opportunity for those who have an OFFICIAL DIAGNOSIS and is not open to those who are SELF-DIAGNOSED. Disclosure: The following is a promotional post for Rare Patient Voice. RPV is one of our affiliate advertisers. The links in this post will pay us a small fee if you use them. Thank you! |
Many of us have, or care for people who have, a disease or condition, and sometimes you may feel that your voice isn’t being heard. Here’s your chance to speak up AND earn at the same time!
If you’ve been following Rat Race Rebellion for a while, you’ve probably seen our posts about Rare Patient Voice.
Through studies, Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.
They also offer a a unique opportunity for patients and caregivers to earn extra income by participating in health-related research studies.
Overview of Study Methods
Participants can engage in various study formats, including:
Telephone Interview/Tele-depth Interview (TDI): Share opinions and attitudes over the phone.
Web-assisted Telephone Interview (WATI): Use platforms like Zoom, Skype, or Teams to provide feedback.
In-person Interview (IDI): Offer insights face-to-face.
Ethnography (ETHNO): Researchers learn about participants in their own environment.
Focus Groups: Small group discussions led by a moderator, either in-person or remotely.
Journaling/Homework: Daily entries on activities and how medical conditions affect participants.
Online Bulletin Boards/Communities: Provide input on specific topics over days or weeks.
Usability/UX Research: Interactions with products or devices are studied to improve design.
In-home Use Test (IHUT): Test products at home and report back.
Voice Response: Interact with a computer-operated phone system.
Current Study Opportunities
As you might imagine, the Rare Patient Voice “Most Wanted Patients & Caregivers” list updates frequently and currently includes:
- Acute Myeloid Leukemia: 60-minute web-assisted phone interview, $150 compensation.
- Alzheimer’s Disease/Cognitive Impairment: 30-minute web-assisted phone interview, $60 compensation.
- Amyotrophic Lateral Sclerosis (ALS): Choice of a 120-minute in-home interview or a 60-minute web-assisted phone interview, up to $200 compensation.
- Beta Thalassemia: 60-minute web-assisted phone interview, $120 compensation.
- Calciphylaxis: 30-minute web-assisted phone interview, $60 compensation.
- Catheter Users (Philadelphia area): 90-minute in-person interview, $270 compensation.
- Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): 30-minute web-assisted phone interview, $100 compensation.
- Chronic Kidney Disease with Cardiovascular Disease: 140-minute/2 interviews + diary or 90-minute duo interview, up to $275 compensation.
- Chronic Urticaria: 90-minute web-assisted phone interview, up to $250 compensation.
- Clostridium Difficile (C-Diff): 60-minute web-assisted phone interview, $120 compensation.
- Congenital Adrenal Hyperplasia (CAH): 5-minute survey, $25 gift card.
- Crohn’s Disease (Non-Caucasian Males): 90-minute web-assisted phone interview, $175 compensation.
- Duchenne Muscular Dystrophy (DMD): 20-minute online survey, $75 e-gift card.
- Epilepsy: 60-minute web-assisted phone interview + 20-minute pre-task, $160 compensation.
- Friedreich Ataxia (FA): 60-minute web-assisted phone interview, $120 compensation.
- Gastric Cancer/Stomach Cancer/Vitiligo: 90-minute focus group, $150 compensation.
- Graves Disease: 30-minute online survey, $60 compensation.
- Growth Hormone Deficiency/Related Conditions: In-person interviews, up to $225 compensation.
- Hemophilia A: Various interview formats, up to $180 compensation.
- Hereditary Angioedema (HAE): 25-minute online survey, $50 compensation.
- Hidradenitis Suppurativa/Non-Radiographic Axial Spondyloarthritis (nrAxSpA): 30-minute online survey, $60 compensation.
- IgA Nephropathy (Bergers Disease): Various interview and survey formats, up to $200 compensation.
- Interstitial Lung Disease/Pulmonary Fibrosis: Two 60-minute web-assisted phone interviews, $240 compensation.
- Leukemia/Non-Hodgkin’s Lymphoma with Cytokine Release Syndrome: 60-minute web-assisted phone interview, $150 compensation.
- Macular Degeneration: Online bulletin board, $180 compensation.
- Multiple Sclerosis: 25-minute online survey, $50 compensation.
- Myelofibrosis: 30-minute web-assisted phone interview + 15-minute homework, $150 compensation.
- Oculocutaneous Albinism: 30-minute Zoom interview, $75 compensation.
- Opioid Addiction: 60-minute web-assisted phone interview, $120 compensation.
- Ovarian Cancer: 20-minute voice response survey, $50 compensation.
- Phenylketonuria: 60-minute online survey, $65 compensation.
- Pyruvate Kinase Deficiency: 60-minute web-assisted phone interview, $190 compensation.
- Rheumatoid Arthritis/Ulcerative Colitis: 30-minute online survey, $50 compensation.
- Stomach Cancer Stage IV: 90-minute web-assisted phone interview, $250 compensation.
- Urticaria: 90-minute web-assisted phone interview, up to $255 compensation.
- Uveitic Macular Edema/Cystoid Macular Edema: 60-minute web-assisted phone interview, $120 compensation.
- Vanishing White Matter Disease: 45-minute web-assisted phone interview + 15-minute pre-task, $120 compensation.
- Vasculitis: 60-minute online survey, $125 compensation.
- Von Willebrand Disease Type 3: 75-minute web-assisted phone interview, $190 compensation.
These studies not only provide a chance to earn extra money but also contribute to important medical research that can improve lives. If you or someone you know is interested, consider exploring these opportunities with Rare Patient Voice.
HOW TO APPLY
CLICK HERE to go to the Rare Patient Voice site where you can sign up. For more jobs like this, check our Newest Jobs & Gigs page. To be the first to hear about jobs like these, join our free Telegram channel. Good luck as you make your work from home plans a reality!
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