New York MDSTARnet Feasibility of Expansion to other Muscular Dystrophies

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Project Abstract The muscular dystrophies are the heterogeneous group of inherited muscular disorders characterized by muscle wasting and weakness, and are affecting both children and adults. The worldwide prevalence of inherited neuromuscular diseases estimated in a review study was of 28.6/100,000 and 33.3/100,000 if rarer disorders are included. As a group, these disorders, covers a considerable proportion of patients with chronic disease, however, recent studies of prevalence of the muscular dystrophies in the United States are lacking. For two funding cycles, the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) has identified and tracked the health of patients with Duchennne and Becker muscular dystrophy (DBMD). This new funding cycle will seek to characterize the population of individuals who have a variety of muscular dystrophies through the expansion and modification of MD STARnet. The project will assess the feasibility of using the existing infrastructure of MD STARnet to expand to population-based surveillance for other types of muscular dystrophy.