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 will improve care for those living with the disease.
MD STARnet is the only research program designed to collect health information on everyone with muscular dystrophy living in specific areas of the United States. Most muscular dystrophy research programs collect health information only on people with the disease who are treated by specialists at certain medical clinics. In contrast, MD STARnet collects this information from medical clinics, as well as other sources, including hospitals and birth and death certificates.
By collecting health information on a large number of people from multiple sources, MD STARnet research can be used to help improve the care and quality of life for those living with muscular dystrophy. The more we know about the experiences of people with muscular dystrophy, the more we can learn about the course of the disease and what leads to a better quality of life.
In 2019, CDC awarded funding for the next 5-year phase of MD STARnet research to the organizations below. The states or regions where health information data on muscular dystrophy will be collected are in parentheses.
- 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)
More information can be found at CDC.gov.