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Prader-Willi Syndrome (PWS): For Researchers and Health Care Providers

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  • ​NICHD Research
    • NICHD's Intellectual and Developmental Disabilities Branch (IDDB) supports extramural research on a variety of intellectual and developmental disabilities, including PWS.
      • NICHD IDDB Council Report (PDF - 1.01 MB) describes the scope of work supported by the Branch, including support for training; support for centers for research into intellectual and developmental disabilities; integration of research, training, and support; and collaborations with federal agencies, organizations, advocacy groups, and community partners. ​
      • The IDDB also supports the Angelman, Rett, and Prader-Willi Syndromes Consortium External Web Site Policy as part of its efforts to understand PWS and related conditions. The consortium is part of the Rare Diseases Clinical Research Network External Web Site Policy, which provides information for health and research professionals about ongoing clinical research.
    • The NICHD's intramural Unit on Metabolism and Neuroendocrinology researches the endocrinological characteristics of the food behaviors and metabolic symptoms of PWS.
    • The NICHD's intramural Section​ on Growth and Obesity studies the metabolic and behavioral factors in body weight regulation and body composition during childhood.
  • NIH Resources
    • The Genetics Home Reference includes a PWS page with links to published reviews, clinical trials, and information about related genes.
    • The Strategic Plan for NIH Obesity Research (PDF - 716 KB) provides a detailed review of the full range of research supported by the NIH on obesity. It addresses all areas of research, including basic science research, prevention, and treatment. It also addresses strategies for dissemination of research findings.
    • The 2012 Workshop on Rare Syndromic Body Fat Disorders, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases, addressed rare disorders in which obesity is a common feature. Participants also discussed the study of families with disorders including PWS; research into etiology and treatment; and areas of ongoing research.
  • The Prader-Willi Syndrome Association (USA) External Web Site Policy
    The association sponsors research on topics related to PWS, including obesity, behavioral interventions, and respiratory symptoms, plus basic research relevant to PWS.
  • The Foundation for Prader-Willi Research External Web Site Policy
    The foundation supports research aimed at eliminating the challenges of PWS, particularly research on the shift from failure to thrive to excessive hunger, gene reactivation, and the cellular phenotypes of PWS.
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