Abstract
Fifty-seven attendees representing 17 U.S. academic institutions, in addition to Parent Project Muscular Dystrophy (PPMD), the Centers for Disease Control and Prevention (CDC), Muscular Dystrophy Association (MDA), Cystic Fibrosis Foundation (CFF), National Institutes of Health (NIH), parents and industry, gathered to discuss the care of patients and families living with Duchenne/Becker muscular dystrophy (DBMD). The meeting, sponsored by Parent Project Muscular Dystrophy, was organized in response to clinical care discrepancies that exist between centers treating patients with Duchenne/Becker muscular dystrophy in North America. Currently, a number of care delivery models are in existence, each presenting unique administrative and financial challenges. Given the complexity of the disease, however, a multi-disciplinary care delivery model theoretically seems optimal. The purpose of this conference was to explore the unique clinical needs of the Duchenne/Becker patient and to investigate how centers could best align clinical programs to address these needs.
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