# Surveillance of muscular dystrophy in the Southeastern United States

> **NIH ALLCDC U01** · UNIVERSITY OF FLORIDA · 2021 · $350,000

## Abstract

The various forms of muscular dystrophy are individually rare, but these are devastating neuromuscular
disorders that collectively have a major impact on the health and lives of affected individuals, family members,
and communities. Such diseases have attracted greater attention from the public, health care providers, and
pharmaceutical/biotechnology firms in recent years, but despite the higher profile, knowledge about the
epidemiology, access to healthcare resources, and outcomes of these disorders remains scarce, especially for
members of minority populations. It is particularly difficult to study these issues for muscular dystrophy given
the complex array of genetic subtypes that have been delineated for this category of inherited muscle disease
over the past several decades. To help address these knowledge gaps, we proposed to establish a new site
for the MD STARNet consortium, focusing on a discrete geographic region of northern Florida that has a
substantial population base. This population-based study will be facilitated by a collaboration with the Florida
Department of Health and the vast databases available to the Institute for Child Health Policy at the University
of Florida. This project will yield new, important knowledge regarding the epidemiology, access to care, and
outcomes of muscular dystrophy. Given the sizeable minority populations that exist in the areas to be studied,
it is expected that much new knowledge regarding these populations will be derived from the proposed work.

## Key facts

- **NIH application ID:** 10220734
- **Project number:** 5U01DD001243-03
- **Recipient organization:** UNIVERSITY OF FLORIDA
- **Principal Investigator:** SONJA ANN RASMUSSEN
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2021
- **Award amount:** $350,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10220734

## Citation

> US National Institutes of Health, RePORTER application 10220734, Surveillance of muscular dystrophy in the Southeastern United States (5U01DD001243-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220734. Licensed CC0.

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