# Network for Observational Study of Virginia Muscular Dystrophies (NoVA MD)

> **NIH ALLCDC U01** · VIRGINIA COMMONWEALTH UNIVERSITY · 2021 · $342,314

## Abstract

Project Summary/Abstract
The Muscular Dystrophies are neuromuscular disorders that account for an increasing burden of medical
disability and healthcare costs. All of these disorders have some evidence to suggest that early detection and
aggressive preventative care management may improve the morbidity and mortality. To that end, many
muscular dystrophies have an existing or nearly complete standard of care guideline. The implementation of
such care requires early detection of affected individuals or those at-risk. In many disorders, such as
Duchenne Muscular Dystrophy or Myotonic Dystrophy, there is a documented delay in diagnosis that impairs
qualified individuals from delivering such care. This is underscored by promising new treatments being
developed for Duchenne Muscular Dystrophy or Myotonic Dystrophy. It is very likely that treatment
effectiveness may hinge on early delivery. This application proposes to develop a surveillance network in the
Commonwealth of Virginias to detect all cases of muscular dystrophy. Virginia includes a diverse population of
around 8.3 million persons. The surveillance program proposes use the robust network of muscular dystrophy
care centers as the primary surveillance source, bolstered by secondary state and hospital sources. The
investigators have proposed surveys of patients to identify the additional impact of cognitive impairment in the
muscular dystrophies. A second survey is proposed to understand the complications in pregnancy related to
the muscular dystrophies. Finally, this proposal seeks to identify care disparities in underserved communities,
particularly through guideline adherence, and address these disparities. Once complete, this proposal will
achieve a better understanding of the prevalence, morbidity, and mortality in those individuals with muscular
dystrophy. This information is critical for future disease-modifying therapeutic trials and the detection and care
of those individuals who may not currently have access to the standard of care.

## Key facts

- **NIH application ID:** 10220780
- **Project number:** 5U01DD001242-03
- **Recipient organization:** VIRGINIA COMMONWEALTH UNIVERSITY
- **Principal Investigator:** Nicholas Elwood Johnson
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2021
- **Award amount:** $342,314
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10220780

## Citation

> US National Institutes of Health, RePORTER application 10220780, Network for Observational Study of Virginia Muscular Dystrophies (NoVA MD) (5U01DD001242-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220780. Licensed CC0.

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