Natural History Study on PWS Recruiting Participants

The National Institutes of Health is in the second phase of the Rare Diseases Clinical Research Network (RDCRN) grant, and Prader-Willi syndrome part of one of the 19 research consortia. The Rare Diseases Clinical Research Consortia and a Data Management Coordinating Center (DMCC) will be awarded a total of just over $117 million over the next five years. The research conducted with the new funding will explore the natural history, epidemiology, diagnosis, and treatment of more than 95 rare diseases.

Prader-Willi, Rett and Angelman syndromes consortium, is only one of five renewed from the ten consortiums that were part of the first five/six year grant. The purpose of this study is to evaluate the clinical features and genetic basis of PWS and to determine how these conditions affect a person throughout a lifetime.Anyone interested in participating in the PWS natural history study should go to http://clinicaltrials.gov/ct2/show/NCT00375089.

  edited: 02/09/2012