PWSA (USA) Research Grant Approved Dec. 2004
“Causes of Death in Prader-Willi Syndrome”
(Dr. David A. Stevenson) University of Utah

PWSA (USA) has demographic information on 147 individuals and over 25% died in the first 18 years of life. Requests for information through family-completed questionnaires were sent and as of July 2005 we have received 28 completed questionnaires. Autopsy reports have been received on 12 individuals. This documents a functional infrastructure to systematically collect clinical history information and necropsy data on individuals with PWS. Future results from this study could help delineate causes of death and early demise in patients with PWS in order to provide clinicians with guidance in patient management to decrease morbidity and mortality.

edited: 08/19/2008