Subjects Needed for PWS Studies
The National Institutes of Health maintains a searchable database which provides patients, family members and the public with information about current ongoing clinical research studies at clinicaltrials.gov. Click here to search this database for current and recently completed clinical trials relevant to people with Prader-Willi syndrome .
The Angelman, Rett, and Prader-Willi Syndromes Consortium, sponsored by the NIH Office of Rare Disorders, maintains a contact registry for individuals with these disorders. Please consider joining the registry to be notified of applicable clinical trials.
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.
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 contact:
Dr. Barbara Whitman
Saint Louis University School of Medicine
(314) 268-4027
whitmanb@slu.edu
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
(303) 794-1182
Learning Profiles of Children with Prader-Willi Syndrome
Researchers at the Clinical Center for Development and Learning (CDL) at the University of North Carolina at Chapel Hill are conducting a study on learning profiles of children with Prader-Willi Syndrome (PWS) . The results of this study will be used to develop a tool for developing learning plans specific for children with PWS.
We are seeking 100 families of children ages 3-17 with PWS to participate in a questionnaire study. This study will involve parents and teachers completing a questionnaire designed to explore the educational and cognitive strengths and needs of children with PWS. Parents will also be asked to complete three additional short questionnaires about their child's behavior and food preferences. Participation in this portion of the study is optional and will take approximately 30 minutes for teachers and 1 hour for parents. Parents will receive a letter outlining their child's strengths and needs, with recommendations based on their child's profile.
In addition, we are seeking 50 families to complete the above study; in addition their child would participate in an assessment of neuropsychological and educational abilities. The assessment at the CDL will take approximately 3 hours. Families will receive a thank you gift and a full report of their child's neuropsychological and educational strengths and needs, with recommendations based on their child's profile.
Participation is completely voluntary and you may choose not to participate in any portion of the study or withdraw from the study at any time.
For more information contact Dr. Anne Wheeler at 919-843-7049 or 919-966-5171 or at anne.wheeler@cdl.unc.edu.
Octreotide Intervention in Children with PWS
Dr. Andrea Haqq of Duke University is enrolling interested families of children with PWS in a new study. This study will investigate the effect of Octreotide therapy over a period of 6 months on food intake, sense of hunger, and body weight in children with Prader-Willi Syndrome (PWS). Eligible children must be between the ages of 5-17 and must have a BMI (body mass index ) over the 85th percentile for their age. Compensation will be provided for participation in this study.
If you would like to hear more about this study, please contact:
Juanita J. Cuffee
Clinical Research Coordinator
Duke University Medical Center
Pediatric Endocrinology
109 Sarah W. Stedman Nutrition and Metabolism Center
(919) 660-6719-office
(919) 812-9219-cell
(919) 660-8802-fax
juanita.cuffee@duke.edu
Mailing Address:
DUMC 3080
Durham, NC 27710
