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
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 around the world, including a 100% virtual option! The new TEMPO at-home site requires NO TRAVEL and offers flexible scheduling. For more information, visit www.tempopwsstudy.com
VNS4PWS FOR DISRUPTIVE BEHAVIOR (AGES 10-40)
Does your loved one struggle with disruptive behavior and temper outbursts? We are looking for our final few participants to fill this trial! The VNS4PWS trial is enrolling people with PWS who have a history of temper outbursts over the past 6 months. Only 2 in-person visits are required. Learn more >>
ARD-101 FOR HYPERPHAGIA (AGES 13+)
HERO is a Phase 3 clinical trial investigating the effects of ARD-101, an oral tablet, on hyperphagia-related behavior in people with PWS ages 13+. Several new sites are now open. For more information, visit www.heroforpws.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.
MyHQ
The Prader-Willi Syndrome Research Team at Vanderbilt University is looking for people with PWS ages 10+ who can share how hunger affects their lives. The study is virtual and will take less than 20 minutes for parents and less than 20 minutes for their child with PWS in a ZOOM call with an interviewer. Get started >>
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.
