# The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current

> **NIH ALLCDC U01** · CENTER OF ENVIRONMENTAL HEALTH · 2021 · $375,000

## Abstract

Project Abstract
 The muscular dystrophies (MDs) are a heterogeneous group of inherited muscular disorders
characterized by muscle wasting and weakness, and they affect both children and adults. The worldwide
prevalence of inherited neuromuscular diseases estimated in a review study was 28.6/100,000, and
33.3/100,000 if rarer disorders were included. As a group, these disorders cover a considerable proportion of
patients with chronic disease, while recent studies of prevalence of the MDs in the United States are lacking.
For this project, we propose utilizing the experience acquired and methods developed over the past 16 years
to improve on an already established muscular dystrophy surveillance system conducting longitudinal,
population-based surveillance and research of eligible MDs by identifying individuals with eligible MDs, and
conducting longitudinal follow-up and research. We plan to continue our multiple source surveillance efforts, as
they have been effective for the Muscular Dystrophy Surveillance, Tracking and Research Network (MD
STARnet). Further, our proposed use of administrative data will lower costs while enhancing case identification
to yield more complete prevalence rates. Second, we will capitalize on the extensive network of expertise our
site has developed throughout the years to develop a survey that complements the surveillance data and helps
address the critical analytic questions posed by the organizations and patient advocacy groups which
represent individuals affected by the various muscular dystrophies. Lastly, ensuring that patients with rare
diseases get access to the best quality diagnosis and care presents challenges that are best addressed
through collaborations and sharing of resources. By working with stakeholders such as patient organizations,
clinicians, and researchers, and sharing our findings with policy makers and payers, our efforts may be used to
improve systems of care to provide maximal results at minimal costs, including the financial costs to society
and the burden of care for families. We will be partnering with local, state and national programs and patient
advocacy groups during project development and sharing study findings often. Successful collaboration and
wide distribution of study findings will improve the lives of patients and their families, and may lead to additional
clinical studies in order to enhance knowledge about rare diseases.

## Key facts

- **NIH application ID:** 10220765
- **Project number:** 5U01DD001252-03
- **Recipient organization:** CENTER OF ENVIRONMENTAL HEALTH
- **Principal Investigator:** Aida Soim
- **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/10220765

## Citation

> US National Institutes of Health, RePORTER application 10220765, The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component A - Core-Current (5U01DD001252-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220765. Licensed CC0.

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