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.

Public Health Relevance

Component A The SC MD STARnet project will maintain a dynamic population-based surveillance system for eligible muscular dystrophy cases, and 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. This work will be used to inform professionals, advocates, and other key stakeholders through presentations and publications.

Agency
National Institute of Health (NIH)
Institute
Centers for Disease Control and Prevention (NCBDD)
Type
Research Project--Cooperative Agreements (U01)
Project #
1U01DD001245-01
Application #
9872244
Study Section
Special Emphasis Panel (ZDD1)
Project Start
2019-09-01
Project End
2024-08-31
Budget Start
2019-09-01
Budget End
2020-08-31
Support Year
1
Fiscal Year
2019
Total Cost
Indirect Cost
Name
SC State Department/Health/Environmental Contr
Department
Type
DUNS #
808385892
City
Columbia
State
SC
Country
United States
Zip Code
29201