# The South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet)- Component C

> **NIH ALLCDC U01** · SOUTH CAROLINA DEPARTMENT OF PUBLIC HEALTH · 2020 · $80,000

## Abstract

Abstract Component C
 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). The overarching aim of
this component of the project is to conduct ongoing research about 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 result in at least five peer reviewed publications and five national presentations to
professional societies, national conferences, or other meetings that include
professionals and advocates for 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. Throughout the funding
cycle we will both lead projects and simultaneously act as secondary analysts on
projects lead by other sites or NCBDDD. 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, publish at least 5 manuscripts, and make at least 5 presentations about the
surveillance and research findings at national meetings of clinicians, health care
providers, advocates, and other interested parties.

## Key facts

- **NIH application ID:** 9993161
- **Project number:** 5U01DD001244-02
- **Recipient organization:** SOUTH CAROLINA DEPARTMENT OF PUBLIC HEALTH
- **Principal Investigator:** Reba Berry
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $80,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9993161

## Citation

> US National Institutes of Health, RePORTER application 9993161, The South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet)- Component C (5U01DD001244-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9993161. Licensed CC0.

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