Clinical studies aimed at better understanding Prader-Willi syndrome and investigating new treatments for PWS are taking place around the world. Participation is key to moving these potential therapies forward. There are a number of ways you can stay informed:
- Sign up for our Clinical Trial Alerts Bulletin. We will announce new clinical trails as they open. For a current list of ongoing and upcoming clinical trials, read the fall 2016 Clinical Trials Alert here.
- Participate in the Global PWS Registry. The registry will give you the option of allowing researchers to contact you about trial opportunities.
- Become a fan of the FPWR Facebook page and watch for our announcements!
- The clinicaltrials.gov website is a comprehensive list of clinical studies taking place around the world. Search for PWS trials using keywords “Prader-Willi” or “PWS”.
- Learn more about clinical trials from our webinar and FAQs, and from this page from the National Institutes of Health on clinical trial basics.
- Check this page often for updates and additions to our list of current clinical trials!
Note that FPWR does not endorse or recommend any particular clinical study. Please work with your doctor and the study sponsor to determine if a specific clinical study is right for you or your loved one with PWS.
Are You Interested in Participating in a Clinical Trial?
After years of there being very few new drugs and interventions for PWS, we are embarking on an important and exciting period of PWS research. We now have several new clinical trials in process, testing a variety of interventions for hunger, obesity, behavior and other characteristics of PWS, with additional studies planned for the near future. Some of the clinical trials are be for children, while others focus on adults with PWS.
FPWR is dedicated to providing you with information on clinical trials! Please click the button below for details on ongoing and upcoming PWS trials.
“We have been involved directly with PWS research since our now 7 year-old son was 18 months-old. My husband and I know that our son would not be doing as well as he is now if it weren’t for the families before us who chose to be involved in research studies. While we couldn’t prevent our son from having Prader-Willi Syndrome, we hopefully can prevent the future generation of children and adults with PWS from having to endure some of the hardships our son has had to endure. Plus, meeting researchers who are dedicated to helping individuals with PWS has also had an immediate payoff for us – we have experts to consult when we run into medical or behavioral issues.” — Cindy Szapacs, mom to Dash