What's New at Rare Patient Voice?
Study Results
Many patients and caregivers have considered participating in a clinical trial, but most have not gone through with taking part. Earlier this year, a Rare Patient Voice survey explored patient perspectives on decentralized clinical trials (DCTs), including prior trial experience, barriers to participation, and preferences for technology-enabled research models. Three key takeaways emerged from the survey results:
- Reducing logistical barriers is critical for participation - Travel requirements, frequent site visits, and time away from work or family remain major barriers to clinical trial enrollment. Decentralized approaches can significantly reduce these burdens.
- Patients value flexibility and convenience - Features such as telemedicine visits, local lab testing, flexible scheduling, and home-based services make trial participation easier to integrate into daily life.
- Clear communication and supportive technology matter - Patients prioritize regular communication with research teams, easy access to support, and user-friendly digital tools that simplify participation and improve the overall trial experience.
For the full study results, download the RPV presentation, Patients at the Center: Understanding Preferences in the Age of Decentralized Trials.
Your Time Is Valued, Even If You Didn’t Qualify
Your time is valued, whether you qualify for a study or not. Each month we automatically enter those who tried but did not qualify for a study into a drawing for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Natalia!
Partner Corner
Kim Nash is a passionate advocate for the chronic illness community. After her own journey with chronic health conditions, she discovered the profound power of sharing stories and connecting with others who truly understand. The Chronic Truth podcast was born from a simple belief: no one should feel alone in their health journey. Through honest conversations and heartfelt interviews, Kim creates a safe space where patients, caregivers, and healthcare professionals can share their experiences and insights. Whether you’re newly diagnosed, a seasoned warrior, or someone who loves a person with chronic illness, The Chronic Truth is here to remind you that your story matters and your voice deserves to be heard. Visit us at: https://chronictruthpodcast.com
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! The list of studies we are working to fill can be found at https://rarepatientvoice.com/patients/study-opportunities/.
1. If you are already a member of the Rare Patient Voice community and would like to be considered for an open study, please complete this survey: https://rpv.q-one.tech/survey/2GxFnE077k1W
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!
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 (typically) per hour 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 $18 million dollars since 2013 for participating in research studies.
