CDC's Surveillance and Research of Muscular Dystrophies and Neuromuscular Disorders

Submission Date: April 11, 2014

Award Ceiling: $1,550,000

Purpose. Using methods based on those from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet), this funding opportunity announcement (FOA) will support: 1. Conducting population-based surveillance, longitudinal follow-up, and public health research for muscular dystrophies and neuromuscular disorder(s): 1) to develop estimates for prevalence, survival, healthcare service use and costs, disparities in access to care (by proximity to source of care, race/ethnicity, and SES), and 2) to determine associations between specific clinical treatments and specific outcomes for specific types of MD and neuromuscular disorders, and 3) to support public health and clinical practice for prevention of morbidities and their progression among persons with muscular dystrophy and neuromuscular disorders 2. Expanding the number of surveillance site(s) to increase the demographic, racial, and ethnic diversity in the current MD surveillance system 3. Sharing data with stakeholders seeking to improve health and access to care of people living with these conditions 4. Evaluating, modifying, and documenting the methodology and infrastructure of the surveillance system 5. Conducting pilot studies that investigate specific MD knowledge gaps and sharing results with participants and stakeholders.

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