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Prader-Willi Syndrome (PWS) and Early-onset Morbid Obesity (EMO) Study

Welcome to the Prader-Willi Syndrome (PWS) and Early-onset Morbid Obesity (EMO) Natural History Study.

We are currently recruiting families with a child with Prader-Willi syndrome (PWS) or Early-onset childhood Morbid Obesity (EMO).

The purpose of this study is to collect natural history information on Prader-Willi syndrome and early-onset morbid (severe) obesity to learn more about how these conditions can affect a person throughout his or her life, from birth to adulthood. The researchers are hoping that the study will help in understanding and improving the treatment of these disorders. Only by studying a large number of patients with a rare disorder can meaningful data be obtained that will help patients.

The research procedure involves a DEXA body composition scan, standard psychological testing, blood drawing for DNA and RNA studies, cheek (buccal) swabs or mouthwash for DNA sampling, physical examination and measurements, review of medical records and digital photographs.

The only forseeable discomfort associated with the study is the invasion of your privacy. There are no direct benefits from participation in the study. However, this study may explain the cause of your child's Prader Willi Syndrome or Early-onset Obesity in some cases which may allow for a better description of the syndrome and genetic counseling. Benefits for society are potentially great if the scientific and health communities gain information about the syndrome genes, their functions, and the pathogenesis of these conditions.

If you are interested in participating in this research or have questions, please contact us at vkimonis@uci.edu.