SC Surveillance of Muscular Dystrophies - Component A The South Carolina Muscular Dystrophy Surveillance project is led by the South Carolina (SC) Department of Health and Environmental Contral (DHEC) and works closely with organizations such as the University of South Carolina (USC), Revenue and Fiscal Affairs Office (RFA), and University of Mississippi Medical Center (UMMC). The overall goals of this project: (1) is to maintain and broaden a dynamic population-based surveillance system for muscular dystrophy (MD), and (2) to conduct ongoing analyses of the health status, health care utilization, and public health impact of people with MD. We will estimate prevalence and survival and track clinical indicators of care to understand diagnosed prevalence, disease progression, clinical care, and health status. We will conduct longitudinal, population-based surveillance across the lifespan on eligible MD cases with Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), fascioscapulohumeral (FSHD), limb-girdle MD (LGMD), congenital MD (CMD), Emery-Dreirfuss MD (EDMD) and distal MD. We will build on the methods and lessons learned from previous MD STARnet methodology to determine if there are changes in prevalence and survival and to describe progress and care. We will work with other sites and the CDC/NCBDDD to (1) Increase awareness and understanding among providers, patients, and caregivers about: disease prevalence, mortality/survival, care utilization, access to care and new treatments, disease progression and comorbidities, and factors that lead to better outcome; (2) Improve accuracy and efficiency in case finding and data collection (3) Improve quality of surveillance data (4) Disseminate results to service providers, advocates, and policy makers, with the goal of identifying opportunities to improve health for all individuals living with MDs. All this work will be done while we build partnerships with MD partners/stakeholders and as we collaborate with other agencies. We will analyze and publish at least 3 manuscripts, and present findings to at least 3 national meetings of clinicians, health care providers, advocates, and other interested parties. The long-term outcome of MD surveillance is to address knowledge gaps that will (1) Improve the health of individuals with MDs; (2) Prolong survival for individuals with MDs; and (3) Improve quality of life for individuals with MDs and their families. (Abstracts for optional components B & C are located under "other attachments" in this application)
