Muscular Dystrophy Research and Tracking

Key points

MD STARnet collects critical information about muscular dystrophy that aims to improve care for those living with the disease.

Smiling young boy in wheelchair with muscular arms drawn in chalk on blackboard behind him

MD STARnet: Overview

The Centers for Disease Control and Prevention (CDC) funds the Muscular Dystrophy Surveillance, Tracking, and Research Network, known as MD STARnet. MD STARnet collects critical information about muscular dystrophy that aims to improve care for those living with the disease.

MD STARnet is the only program designed to collect health information on everyone with MD living in specific U.S. areas. Most MD research programs collect health information only on people who are treated by specialists at certain medical clinics. In contrast, MD STARnet collects this information from medical clinics, as well as hospitals and birth and death certificates.

MDSTARnet collects health information on a large number of people from multiple sources. Findings from this program can help improve the care and quality of life for those living with MD.

Phase 4 of MD STARnet

In 2019, CDC awarded funding for Phase 4 of MD STARnet. The states or regions where health information is being collected for Phase 4 are listed below.

  • University of Iowa (Iowa)
  • University of Florida (23 counties in northern Florida)
  • New York State Department of Health (21 counties in western New York)
  • Research Triangle Institute (33 counties in North Carolina's Piedmont region)
  • South Carolina Department of Public Health & Environmental Control (South Carolina)
  • University of Utah (Utah)
  • Virginia Commonwealth University (Virginia)
The states or regions where health information is being collected for Phase 4
In 2019, CDC awarded funding for Phase 4 of MD STARnet.

Key MD STARnet questions

MD STARnet collects health information on people with the following types of muscular dystrophy: Duchenne, Becker, myotonic, limb-girdle, facioscapulohumeral, congenital, distal, and Emery-Dreifuss muscular dystrophies. For more information on muscular dystrophies, visit our Types of Muscular Dystrophy page.

CDC and partners hope to answer the following key questions:

Prevalence

  • How many people are affected by these types of MD?
  • Are certain types more common among specific racial and ethnic groups?

Health and healthcare

  • How does the health of people with MD change over time?
  • What health services are patients and their families receiving?
  • How do the treatment and services they receive change over time?
  • As people with MD become adults, what health services do they receive?
  • Does race, ethnicity, education, or location impact access to care?
  • Is patient care in line with the most recent clinical guidance?
  • What is the pregnancy experience of people affected by MD?

Quality of life

  • What are the education and employment experiences of people with MD?
  • How common are pain and fatigue and how are they managed?
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Content Source:
National Center on Birth Defects and Developmental Disabilities