Participants Needed for PWS Studies

The National Institutes of Health maintains a searchable database that provides patients, family members and the public with information about current clinical research studies, see: clinicaltrials.gov. Click here to search this database for current and recently completed clinical trials relevant to people with Prader-Willi syndrome
Angelman, Rett, and Prader-Willi Syndromes Consortium, sponsored by the NIH Office of Rare Diseases Research, maintains a contact registry for individuals with these disorders. Please consider joining the registry to be notified of applicable clinical trials. An ongoing study Characteristics of Prader-Willi Syndrome and Early-Onset Morbid Obesity is recruiting participants.

Additional clinical trials that may be of interest to those with PWS:

Please contact each investigator or study coordinator directly for complete details, which will help you evaluate whether the trial is right for you.

Behavioral Treatment of Obsessive Compulsive Symptoms in Youth with Prader-Willi Syndrome: A Pilot Study
Dr. Eric Storch, a Clinical Psychologist in the Department of Pediatrics at the University of South Florida, is conducting a study examining a behavioral treatment for children and adolescents (age 6-17) with Prader-Willi syndrome who experience problematic obsessive-compulsive symptoms. This study, supported by FPWR, is described here. There are two phases to the study, and Dr. Storch is seeking participants in both phases. 

For more information, please view the recruitment information and contact the study principal investigator Dr. Eric Storch at 727-767-8230 or by email at estorch@health.usf.edu

The Effect of Growth Hormone Replacement Therapy on Physical and Behavioral Sexual Development in Persons with Prader-Willi Syndrome

Drs. Myers and Whitman of St. Louis University are performing a study to examine the impact of growth hormone replacement therapy (GHRT) on the sexual/gonadal maturation and functioning, and sexual behavior of males and females with Prader-Willi syndrome (PWS). This study is supported by FPWR; see more details here. The subject population will include 20 adults (10 males and 10 females ages 18 years and over) and 20 youngsters (10 males and 10 females between the ages of 10-14 years) with Prader-Willi syndrome. Adults will be divided between 10 adults previously treated with growth hormone replacement therapy (GHRT) and 10 naïve to GHRT. Youngsters will be drawn from those currently receiving GHRT. GH is provided, free of charge, by Pfizer.

For more information about this study, please review this recruitment information, and contact:

Dr. Barbara Whitman

Saint Louis University School of Medicine
(314) 268-4027
whitmanb@slu.edu

Dr. Anastasia Dimitropoulos at Case Western University in Cleveland, Ohio, is seeking individuals with PWS to participate in two research studies.

The first study: Brain Mechanisms of Overeating: How do High-Calorie Foods Influence the Brain, will use brain imaging (functional Magnetic Resonance Imaging, fMRI) to determine if there are differences in how the brain responds to pictures of high-calorie foods. Individuals with PWS, age 18-40 are needed for this study, and additional details can be found here.

The second study will focus on autistic symptoms in those with PWS. Individuals aged 7-40 are needed for this study. This study includes cognitive and behavioral assessments, with some participants also eligible for the fMRI portion of the study. More information can be found here.

Both studies are supported by the National Institutes of Child Health and Human Development, with additional funding for the second study from the Prader-Willi Syndrome Association (USA). For more information about these studies, please contact Dr. Dimitropoulos at (216) 368-3471 or axd116@case.edu.

Exercise in Children with Prader- Willi Syndrome

Researchers in the Kinesiology Department at California State University Fullerton (CSUF), in collaboration with the Children’s Hospital of Orange County (CHOC) located in the city of Orange in CA, are investigating the hormonal and metabolic responses to exercise in children with PWS and without PWS (ages 8-18). The purpose of this study is to characterize these responses to exercise based on body fat or the genetics of PWS.

Additional details can be found here. For more information or to participate in this study, please contact Dr. Daniela Rubin by phone (714-278-4704) or by email at drubin@fullerton.edu or Dr. Dan Judelson at 714-278-5423 or by email at djudelson@fullerton.edu. Hablamos español

Evaluation of Sensory Processing in Individuals with PWS

Dr. Lucy Jane Miller, Director of the KID Foundation, is performing a study to evaluate sensory processing in children and young adults with Prader-Willi syndrome. In this FPWR-funded study, participants will be interviewed and will participate in a laboratory-based assessment of response to sensory stimulation.

For more information on this study, please contact:

Crystal Reed
KID Foundation
crystal@spdfoundation.net
(303) 794-1182