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

> **NIH ALLCDC U01** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2021 · $80,000

## Abstract

PROJECT SUMMARY/ABSTRACT
The muscular dystrophies (MD) 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 significant motor,
respiratory, and cardiac complications, affected individuals and families have social, psychological, and
cognitive issues which are not well understood. For the MD STARnet project, nine muscular dystrophies are
included: Duchenne and Becker muscular dystrophy (DBMD), distal, Emery-Dreifuss, limb-girdle,
oculopharyngeal, congenital, myotonic dystrophy, and facioscapulohumeral dystrophy. Recent development
and implementation of standardized care guidelines for DBMD, and other neuromuscular conditions are
expected to result in improved clinical outcomes; however, published evidence remains limited. Emerging
therapeutic options for these disorders are a source of great hope and opportunity for realizing improved
outcomes; however, a better understanding of the range of disease severity and current care burden in these
disorders is critical to the success of such initiatives. The University of Utah MD STARnet team has been
active during the current funding cycle (DD001108: 9/1/2014-8/31/2019) and is uniquely situated to continue to
conduct research as part of Component C. As part of Component A, our engagement with local and national
neuromuscular foundations has been important to determine questions that our research can answer in order
to address gaps in knowledge. For Component C, we will focus on the objectives and approach outlined in the
funding opportunity announcement with an overall goal to continue our existing projects with proposed new
research projects using MD STARnet data. Furthermore, we plan to conduct surveys to evaluate the
psychological and neurobehavioral function, and health-related quality of life in patients with MDs. We will
disseminate our findings through local, national, and international presentations at professional society
meetings and submit manuscripts to peer-reviewed journals. Our existing program’s strengths and resources
will increase knowledge of the medical issues and barriers to care facing these individuals, and enhance our
ability to provide more consistent quality care to our patients. Furthermore, we propose that this project will
allow us to assess the impact of implementation of standardized care guidelines on clinical outcomes and cost
of care for such patients. We will analyze high-priority questions addressed in the MD STARnet Research
Agenda (Aim 1), identify additional gaps in understanding with a focus on psychological and neurobehavioral
comorbidities and health-related quality of life (Aim 2), and provide secondary analyst support for other MD
STARnet sites on a minimum of three research projects (Aim 3).

## Key facts

- **NIH application ID:** 10220733
- **Project number:** 5U01DD001246-03
- **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:** $80,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10220733

## Citation

> US National Institutes of Health, RePORTER application 10220733, Component C - The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) in Utah (5U01DD001246-03). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10220733. Licensed CC0.

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