Research

Prader-Willi Syndrome and Early-onset Morbid Obesity Natural History Clinical Study

The purposes of this study are to a) evaluate effects of growth hormone treatment in people with Prader-Willi Syndrome (PWS) when started at different 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 individuals with PWS and EMO. This research study is being conducted under the auspices of the Rare Disease Clinical Research Network (RDCRN) at currently 4 institutions across the USA. It is funded by the NIH.

To learn more about the study and eligibility, go to http://rarediseasesnetwork.epi.usf.edu/

Yale University Child Study Center PWS Research Program

The Yale PWS Research Program is an ongoing series of studies funded by the National Institute of Child Health and Human Development (NICHD). The purpose of the research is to understand the developmental course, brain function, and neuropsychological and psychiatric characteristics of people with Prader-Willi syndrome, Williams syndrome, and autism. Children and adults with PWS (at least 8 years of age) are invited to participate. The study takes place over a 2-day visit to the Yale Child Study Center in New Haven, Connecticut. Lodging is provided and families are given an honorarium of up to $210 for participation. During the 2-day visit, individuals with PWS will be given cognitive, educational and speech assessments, a psychiatric evaluation, and a ghrelin assessment in conjunction with a MRI functional brain scan investigating hyperphagia. Parents will have the opportunity to speak with our psychiatrist, receive individual feedback at the end of the assessments, and receive a written report of the results and recommendations for school and providers. Participation in other research studies does not preclude participation in the Yale Research Program. For more information, please contact Anastasia Dimitropoulos at (203) 764-9728 or anastasia.dimitropoulos@yale.edu. The project team will also be at the Fall Meeting to introduce the study and answer questions.

Duke Children's Hospital & Health Center

Andrea Haqq, MD, Principal Investigator, who is a pediatric endocrinologist has informed us of a research study focusing on understanding childhood obesity and specifically, the mechanism of development of obesity (including regulation of a hormone called ghrelin) in healthy children, children with Prader-Willi Syndrome (PWS) and children with hypothalamic obesity. She would like to invite you/your childe/your patient to participate in these ground-breaking research studies looking at body weight regulation in childhood. She is looking for the following subject populations:

These studies will allow us to gain more insight into the regulation of ghrelin in normal children and children with hypothalamic obesity and PWS. The procedures and time involved will vary depending on which study you agree to take part in. No compensation or reimbursement will be offered to take part in these studies. She would be happy to provide any additional specific information about the studies and time commitment involved. Please feel free to call the study's coordinator, Donnetta Miller, at 919-660-6719 or page Andrea Haqq at 919-970-0048 to obtain further information.