The South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet) - Component A & Component E

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Abstract Component A South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet) is a collaboration between the state health department and the state’s flagship university (University of South Carolina, USC). There are two overarching aims of this project: (1) is to maintain 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, survival, and track clinical indicators of care in order to understand diagnosed prevalence, disease progression, clinical care, and health status. In addition, we will design, disseminate, and analyze responses from survey(s) and conduct focus groups/interviews to understand the lived experience of people with MD. We will conduct longitudinal, population-based surveillance on eligible MD cases with Myotonic Dystrophy (DM), Fascioscapulohumeral (FSHD), Limb-girdle (LGMD), congenital (CMD), Emery-Dreirfuss (EDMD) and distal MD. We will follow the Duchenne/Becker MD cohort to determine if there are changes in prevalence and survival and to describe progress and care. We will also develop research methods and tools, including surveys and interviews, and conduct research with other sites and CDC/NCBDDD. All this work will be done while we build partnerships with MD partners/stakeholders and as we collaborate with other agencies. The aim of conducting research with the subpopulations identified through surveillance is to address knowledge gaps (eg. Quality of life, pregnancy and fertility issues, and self-care issues, etc.). We will analyze and publish at least 5 manuscripts and present findings about the surveillance and research studies at least 5 national meetings of clinicians, health care providers, advocates, and other interested parties.