Prader-Willi syndrome (PWS) is a complex orphan endocrine disease characterized by hyperphagia and abnormal food-related behaviors that contribute to severe morbidity and early mortality along with a significant burden on patients and caregivers. Life-long medical care is required but the consistency of services rendered to this population has not been evaluated. This study characterized use of US hospital care, specialty physician care, and growth hormone (GH) therapy for PWS patients at different life stages.
Authors
Merlin Butler, Ann Manzardo, Theresa Strong, Justin Li, David Yin, Marissa Suh, Abigail Silber, Sina Aghsaei, Kevin Francis, Nandini Hadker, Michael Yeh, Shawn Czado, Jennifer Miller
Journal
Journal of the Endocrine Society; Volume 4; Issue Supplement_1; April-May 2020