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

> **NIH ALLCDC U01** · SOUTH CAROLINA DEPARTMENT OF PUBLIC HEALTH · 2021 · $375,000

## Abstract

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.

## Key facts

- **NIH application ID:** 10220779
- **Project number:** 5U01DD001245-03
- **Recipient organization:** SOUTH CAROLINA DEPARTMENT OF PUBLIC HEALTH
- **Principal Investigator:** Reba Berry
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2021
- **Award amount:** $375,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10220779

## Citation

> US National Institutes of Health, RePORTER application 10220779, The South Carolina Muscular Dystrophy Surveillance, Tracking, and Research Network (SC MD STARnet) - Component A (5U01DD001245-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220779. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*