(photo by Neil Brake)
The Vanderbilt Kennedy Center for Research on Human Development has joined the National Institutes of Health's Rare Diseases Clinical Research Network (RDCRN), a group of academic medical centers, patient support organizations and clinical research centers dedicated to developing more effective and individualized treatments for persons with rare genetic disorders.
The Kennedy Center will serve as a site for the RDCRN's Angelman and Prader-Willi syndromes consortium. The site will be directed by Marshall Summar, M.D., associate professor of Pediatrics and Molecular Physiology and Biophysics, who has experience working with pediatric patients with both syndromes.
Other key personnel include Elisabeth Dykens, Ph.D., professor of Psychology and Human Development and associate director of the Kennedy Center, who has done extensive research on the rare genetic disorder Prader-Willi syndrome, and Terry Jo Bichell, R.N., M.P.H., a visiting scholar at the Kennedy Center who currently is conducting research on educational interventions for children with Angelman syndrome, a neurological disorder.
The Vanderbilt Kennedy Network site builds on active affiliations with both of the national patient support organizations. Initial plans are to enroll children and adults in the Natural History Studies for both syndromes, and eventually to enroll them in clinical trials for new treatments as they are created and put into place.