FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (non-drug) or natural history studies. Details of recruiting studies can be found below.
Clinical Trials Recruiting Now
Tirzepatide for Obesity
This is a 48-week trial of Tirzepatide that includes 6 in-person study visits, 4 telehealth visits, and an additional visit 8 weeks after stopping the medication. Study participants must be between the ages of 12 and 26 and have a BMI of 30 or greater. Participants will receive a $50 gift card per visit, as well as Tirzepatide for 1 year. Learn more about this study>>
RM-718 for Obesity & Hyperphagia
RM-718 is an open-label study in which participants will receive a weekly injection of RM-718 for 26 weeks. Participants must be between the ages of 12 and 65 and have a body mass index (BMI) of 30 or more for adults, or a BMI in the 95th percentile for those under 18. Eligible participants who complete the study will have the option to continue receiving RM-718 during a Long-Term Extension Period. Learn more about this study>>
Pitolisant for Excessive Daytime Sleepiness
The Phase 3 TEMPO study is enrolling participants ages 6+ who struggle with excessive daytime sleepiness. 30+ sites are now available. The new TEMPO at-home site requires NO TRAVEL with flexible scheduling. For more information, visit www.tempopwsstudy.com
Online Study Participation Opportunities
Global PWS Registry
The Global PWS Registry is a powerful tool for the PWS community to advance areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community and is also used by researchers and scientists. Visit the registry at www.pwsregistry.org.
Survey Participation Opportunity
Dr. Kasey Bedard would like to learn more about repetitive verbal behavior in PWS. If your loved one asks repetitive questions or makes repetitive statements, please consider completing her 30-minute survey. Participants will be entered for a chance to win 1 of 10 $100 gift cards. Take the Survey >>
Assessing Creativity & Play in PWS study
Dr. Anastasia Dimitropoulos's research lab is currently investigating the long-term effects of play intervention programs for children with Prader-Willi Syndrome. Participation in this study would involve a one-time virtual visit with your child. This visit is estimated to take approximately 60-90 minutes. Compensation is provided for participation.
Email: neurodevelopmentresearchlab@gmail.com
Phone number: 216-368-0112
Website: https://caslabs.case.edu/dimitropouloslab/
Bringing PRETEND to You study
This is a continuation of previous PRETEND projects (the Play-based Remote Enrichment To ENhance Development program). Our lab has spent multiple years building, testing, and refining the PRETEND program, which shows evidence of improving play & related socioemotional skills for children with PWS. We are now looking to train other adults and providers to deliver the PRETEND Program to increase access to this effective treatment program.
Email: neurodevelopmentresearchlab@gmail.com
Phone number: 216-368-0112
Website: https://caslabs.case.edu/dimitropouloslab/
Clinical Trials Overview
A multitude of factors come into play when determining whether to participate in a clinical trial. To help make it easier to see which trials may be right for you and your family, we have generated an easy-to-read matrix that compares common variables such as age and BMI requirements, study sites, and estimated start dates. Click here to see the full PWS Clinical Trials matrix.
Find a Trial Near You
Use our interactive map of clinical trials!
Donation of Tissues Needed
Scientists need samples to study PWS – without your contributions, these studies can’t make progress!
Post-Mortem Brain Donation.
Organ donation is a highly personal decision that has the power to accelerate research and transform the lives of countless families affected by PWS. You can make a tremendous difference in research into Prader-Willi syndrome by participating in this program. In the event of a death, contact the 24-hour hotline number: 1-877-333-0999 for immediate assistance. Learn more >>
While we are pleased to share with you these opportunities for participating in PWS clinical trials, FPWR does not endorse or recommend any specific trial. Please contact the study coordinators directly for important details about each study and to answer any questions you may have. Some trials may have funds available to support travel to study sites.
Please contact the study coordinators directly for important details about each study and to answer any questions you may have. Some trials may have funds available to support travel to study sites.
