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

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Project Summary/Abstract The nine major types of muscular dystrophy are a heterogenous collection of genetic neuromuscular disorders. All nine are characterized by progressive muscle degeneration and weakness, but vary by age of onset, affected muscle groups, involved genes, and rate of disease progression and severity. As part of the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), the Piedmont (central) region of North Carolina has provided a setting for studying eligible muscular dystrophies in a population of over 5.3 million people, including over 1.3 African Americans. We and other participating network sites have demonstrated the value of population-based surveillance of these muscular dystrophies. The collected data represents a rich source of knowledge to be used to improve the lives and care of individuals living with muscular dystrophies. We will to use MD STARnet data to address high-priority questions on the MD STARnet research agenda. The North Carolina MD STARnet team will also collaborate on analysis projects led by other network sites. We will increase understanding of muscular dystrophy through studies of the epidemiology and the genetics of Duchenne and Becker, facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle muscular dystrophies. We will seek to improve care and health outcomes of individuals with myotonic dystrophy, facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle muscular dystrophies through studies of respiratory morbidity among myotonic patients and the uptake of genetic testing among facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle muscular dystrophies. We will serve as secondary analysts on analytic projects led by other states which also address these goals