# The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet): Component C Dissemination

> **NIH ALLCDC U01** · RESEARCH TRIANGLE INSTITUTE · 2020 · $79,840

## Abstract

Project Summary/Abstract
The nine major types of muscular dystrophy are a heterogenous collection of genetic neuromuscular disorders.
All nine are characterized by progressive muscle degeneration and weakness, but vary by age of onset,
affected muscle groups, involved genes, and rate of disease progression and severity. As part of the Muscular
Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), the Piedmont (central) region of
North Carolina has provided a setting for studying eligible muscular dystrophies in a population of over 5.3
million people, including over 1.3 African Americans. We and other participating network sites have
demonstrated the value of population-based surveillance of these muscular dystrophies. The collected data
represents a rich source of knowledge to be used to improve the lives and care of individuals living with
muscular dystrophies. We will to use MD STARnet data to address high-priority questions on the MD STARnet
research agenda. The North Carolina MD STARnet team will also collaborate on analysis projects led by other
network sites. We will increase understanding of muscular dystrophy through studies of the epidemiology and
the genetics of Duchenne and Becker, facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle
muscular dystrophies. We will seek to improve care and health outcomes of individuals with myotonic
dystrophy, facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle muscular dystrophies
through studies of respiratory morbidity among myotonic patients and the uptake of genetic testing among
facioscapulohumeral, congenital, distal, Emery-Dreifuss, and limb-girdle muscular dystrophies. We will serve
as secondary analysts on analytic projects led by other states which also address these goals

## Key facts

- **NIH application ID:** 9991706
- **Project number:** 5U01DD001253-02
- **Recipient organization:** RESEARCH TRIANGLE INSTITUTE
- **Principal Investigator:** Nedra Sharon Whitehead
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $79,840
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9991706

## Citation

> US National Institutes of Health, RePORTER application 9991706, The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet): Component C Dissemination (5U01DD001253-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9991706. Licensed CC0.

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