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

> **NIH ALLCDC U01** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2021 · $375,000

## Abstract

PROJECT SUMMARY/ABSTRACT
The muscular dystrophies are disorders of muscle leading to progressive muscle weakness and reduced
quality of life and mortality due to respiratory and cardiac complications. In addition to motor, respiratory, and
cardiac complications, affected individuals and families have significant social, psychological, and cognitive
issues that are major gaps in understanding. As part of the MD STARnet project, we have identified cases of
all muscular dystrophy types in Utah, using a combination of unique resources available in our state. These
resources include our neuromuscular subspecialty clinics at the University of Utah and Primary Children’s
Hospital where we are the only muscular dystrophy specialty clinics in the intermountain west. Relevant
electronic health systems from the University of Utah and Intermountain Healthcare capture health care
encounters for the majority 95% of the Utah population. A unique electronic resource, the Utah Population
Database, links all individuals in Utah to multiple data sources, including extensive pedigrees, hospital records,
death certificates, birth certificates, ambulatory care and emergency room visits, and the Utah cancer registry.
The proposed project focuses on continuing our surveillance efforts using these resources and enhancing our
longitudinal surveillance for eligible muscular dystrophy cases in order to contribute to the understanding of
prevalence, comorbidities impacting health and well-being, and to address gaps in understanding including
issues psychological and neurobehavioral function and health-related quality of life. This information is critical
for future disease modifying therapeutic trials, and for the detection and care of those individuals who may not
currently have access to the standard of care.

## Key facts

- **NIH application ID:** 10220803
- **Project number:** 5U01DD001249-03
- **Recipient organization:** UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
- **Principal Investigator:** Marcia Lynn Feldkamp
- **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/10220803

## Citation

> US National Institutes of Health, RePORTER application 10220803, Component A - The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) in Utah (5U01DD001249-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220803. Licensed CC0.

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