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We are 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 hope 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 body composition scan, standard psychological testing, blood drawis for DNA and RNA studies, cheek swabs or mouthwash for DNA sampling, physical examination and measurements, a review of medical records and digital photographs.
There are no direct benefits from participation in the study; however, it may help us explain the cause of your child's Prader-Willi syndrome or early-onset obesity; in some cases this 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's genes, their functions, and the pathogenesis of these conditions.
If you are interested in participating in this research or have questions, please contact us.Participation involves:
For more information, contact:
Claudia Shambaugh
Clinical Research Coordinator
949-824-0521
cshambau@uci.edu
Virginia Kimonis, MD
Principal Investigator
949-824-0571
vkimonis@uci.edu