The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination

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Project Abstract Muscular dystrophies are a group of rare, primarily genetically-inherited, disorders that cause progressive muscle weakness and atrophy. The rare occurrence of these conditions poses many challenges including paucity of data, poor understanding of etiopathology and progression of disease, delays in diagnosis and lack of effective long-term cure, to name a few. New York (NY) is one of the oldest sites to have been actively involved in medical record abstraction and surveillance, along with extensive research and data dissemination, to raise awareness in the community ever since the inception of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) in 2002. This project will continue to conduct surveillance activities using MD STARnet methods and use the data to improve the understanding of these conditions, including how common the conditions are and what health and diagnostic challenges are encountered by affected individuals. The ultimate goal would be to improve the lives of these individuals. We will continue to present our findings in targeted, high impact journals and scientific conferences, and will also continue to collaborate with various patient advocacy groups to further the goals of raising awareness and better inform on all recent developments in the field of treatment and care. NY is committed and sensitive to the needs and care of individuals with muscular dystrophy and their caregivers, and will continue to strive to be a research pioneer in achieving the MD STARnet goals.