What's New at Rare Patient Voice?
Study Results
Clinical research is key to progress towards new medications, treatments, and cures for all diseases. Patients play an important role in clinical trials, but many are still hesitant to participate. In September, RPV surveyed almost 2,000 patients and family caregivers on what would make taking part in a clinical trial more appealing. Highlights from the survey results were discussed earlier this month in the first of a two part webinar series hosted by the Center for Information & Study on Clinical Research Participation (CISCRP).
Location of the research site proved to be highly important. One factor that emerged as being appealing to patients and family caregivers is decentralized clinical trials, which enable a patient to take part in a trial from home. Currently, decentralized trials are not offered for all research studies, but that may change in the future as researchers consider patients’ preferences.
Reasons patients and family caregivers gave for their interest in decentralized trials included:
- Comfort and convenience of remaining at home
- Patients have children and pets who need care
- Patients have a job and daily lives they don’t want to disrupt
- Travel is a hassle
- Less exposure to others
- Travel can be especially difficult for some patients (e.g., those with disabilities, Crohn’s disease, etc.)
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 will 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 will be notified via email. Congratulations to our latest winner, Kimberly!
Share Your Voice and Receive a Rarity!
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 Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan with 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!
Partner Corner
Graham's Foundation was founded out of loss, when Nicholas and Jenn Hall’s twins were born at 25 weeks and three days and only one made it home. Graham Hall had an incredibly difficult NICU journey and only lived for 45 days. Nicholas started Graham's Foundation to educate and inform preemie parents so they feel empowered and confident while they navigate the journey of prematurity. Graham's Foundation is committed to a world where no parent goes through the experience of prematurity alone.
Graham's Foundation does this through their Preemie Parent Mentor program, Preemie Parent Care Package program, our award winning MyPreemie app (available on Google Play and iOS, in Spanish and English), preemie blog and our supportive online community. We also connect families with other resources across the country, as well as mentor preemie loss.
November is Prematurity Awareness Month. Learn more and be connected on our website: https://www.grahamsfoundation.org.
Referrals?
Would you like to 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! Each month we will feature one RPV staff member. This month, Richard DeLuca, a Project Manager, is in the spotlight.
Rick became part of Team RPV in 2022. A graduate of Rider University with a degree in marketing, he brings a sales management background to his role as Project Manager. Rick values his job in particular because it enables him to help patients and caregivers participate in research, which can ultimately make a difference in people’s lives.
“My favorite part of working at RPV is doing right by our panel members. It’s rewarding to know that I positively contributed to research which can help future generations afflicted with various conditions.”
Rick lives with his wife, two children, and their cats, Shadow and Ra, in Pennsylvania. In his off hours, he spends time working on aquariums (and keeping his cats away from his fish!), watching war movies, trying new restaurants, and enjoying fall weather.
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 for participating in 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 over $9 million dollars since 2013 for participating in research studies.
