5202: Prader-Willi Syndrome and Early-onset Morbid Obesity Natural History Clinical Protocol
Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.
The purposes of this study are to a) evaluate effects of growth hormone treatment in people with Prader-Willi Syndrome (PWS) when started at difference ages, b) compare people with PWS to people with early-onset morbid obesity (EMO), and c) collect information to use as a foundation for future research studies. Information gained from this study may help tailor long term management for people with PWS and EMO.
The PWS group must be under 60 years of age and have had appropriate testing to confirm a diagnosis of PWS. The EMO group must be under 30 years of age and have a) documented medical history of weight exceeding 150% of Ideal Body Weight (IBW) or b) a Body Mass Index (BMI) of greater than 97% before four (4) years of age. The study will last five (5) years. You must be able to travel (at your own expense) to a Clinical Center once a year for evaluation.
How to Participate:
In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation.
- University of Florida Health Science Center, Gainesville, FL
Coordinator: Christine Keeling, RN
- Kansas University Medical Center, Kansas City, KS
Coordinator: Marilyn Logan
- University of California Irvine, CA
Coordinator: Virginia Kimonis
- Vanderbilt University Medical Center, Nashville, TN
Coordinator: Elizabeth Roof, M.A., L.P.E.
Join the Contact Registry for: Prader-Willi Syndrome