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

> **NIH ALLCDC U01** · CENTER OF ENVIRONMENTAL HEALTH · 2022 · $80,000

## Abstract

Project Abstract
 Muscular dystrophies are a group of rare, primarily genetically-inherited, disorders that cause
progressive muscle weakness and atrophy. The rare occurrence of these conditions poses many challenges
including paucity of data, poor understanding of etiopathology and progression of disease, delays in diagnosis
and lack of effective long-term cure, to name a few. New York (NY) is one of the oldest sites to have been
actively involved in medical record abstraction and surveillance, along with extensive research and data
dissemination, to raise awareness in the community ever since the inception of the Muscular Dystrophy
Surveillance, Tracking and Research Network (MD STARnet) in 2002. This project will continue to conduct
surveillance activities using MD STARnet methods and use the data to improve the understanding of these
conditions, including how common the conditions are and what health and diagnostic challenges are
encountered by affected individuals. The ultimate goal would be to improve the lives of these individuals. We
will continue to present our findings in targeted, high impact journals and scientific conferences, and will also
continue to collaborate with various patient advocacy groups to further the goals of raising awareness and
better inform on all recent developments in the field of treatment and care. NY is committed and sensitive to
the needs and care of individuals with muscular dystrophy and their caregivers, and will continue to strive to be
a research pioneer in achieving the MD STARnet goals.

## Key facts

- **NIH application ID:** 10437577
- **Project number:** 5U01DD001250-04
- **Recipient organization:** CENTER OF ENVIRONMENTAL HEALTH
- **Principal Investigator:** Aida Soim
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2022
- **Award amount:** $80,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10437577

## Citation

> US National Institutes of Health, RePORTER application 10437577, The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) Component C-Enhanced-Dissemination (5U01DD001250-04). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10437577. Licensed CC0.

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