# Component A: Iowa MD STARnet Core Site

> **NIH ALLCDC U01** · UNIVERSITY OF IOWA · 2021 · $375,000

## Abstract

PROJECT SUMMARY
The Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 authorized
the Centers for Disease Control and Prevention to create a National Muscular Dystrophy Epidemiology
Program. This program – The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD
STARnet) – was established in 2002 to conduct population-based surveillance and long-term follow-up of
individuals diagnosed with Duchenne and Becker muscular dystrophies (DBMD). In 2011, the MD STARnet
expanded to include cross-sectional surveillance for seven additional MDs (congenital, distal, Emery-
Dreifuss, facioscapulohumeral, limb-girdle, myotonic, and oculopharyngeal), and in 2014, this expanded
surveillance was continued. Our Iowa MD STARnet Core Site was one of four charter awardees for the MD
STARnet in 2002 and was successfully refunded in 2006, 2011, and 2014. As an MD STARnet Core Site, we
successfully integrated clinical, programmatic, and referral resources provided by key partners in Iowa, such
as the Iowa Neuromuscular Program and the Iowa Muscular Dystrophy Association, with the active,
population-based resources of the Iowa Registry for Congenital and Inherited Disorders to conduct
longitudinal surveillance of DBMD and cross-sectional surveillance for the seven additional MDs. Our
partnership with the Reproductive Molecular Epidemiology Research and Education Program at The
University of Iowa has provided experienced investigators to conduct data analyses and publish MD STARnet
data. For the proposed project, we will use our highly skilled and successful team to extend and expand our
leadership role in population-based longitudinal surveillance and research for the nine MDs. We propose to
continue working collaboratively with CDC investigators and other grant awardees to implement standardized
methods and data collection activities. To accomplish this, we aim to: 1) build new and maintain existing
relationships with MD partners to enhance and promote surveillance efforts; 2) continue to conduct
longitudinal, population-based surveillance using existing MD STARnet methods to identify and gather data
on individuals with one of the nine MDs; and 3) develop research methods and tools to augment surveillance
data collection. Among our planned research activities will be examining pregnancy among individuals with
MD, evaluating clinical trial participation and non-participation, and assessing the impact of clinical trial
participation on the natural history of MD. Findings generated from our proposed surveillance and research
activities will identify the public health impact of MD and contribute to the clinical understanding of the natural
histories, survival and mortality, and healthcare needs of individuals and families affected by MD. These
findings also will guide public health agencies in the development and provision of policies and programs that
will ensure access to comprehensive healthcare services and link individual...

## Key facts

- **NIH application ID:** 10220774
- **Project number:** 5U01DD001248-03
- **Recipient organization:** UNIVERSITY OF IOWA
- **Principal Investigator:** Katherine Dianne Mathews
- **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/10220774

## Citation

> US National Institutes of Health, RePORTER application 10220774, Component A: Iowa MD STARnet Core Site (5U01DD001248-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220774. Licensed CC0.

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