Muscular Dystrophy Surveillance Tracking and Research Network
The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) is a surveillance program currently active in 7 states (Florida, Iowa, New York, North Carolina, South Carolina, Utah, Virginia) and funded by the Centers for Disease Control and Prevention (CDC). The goals of MD STARnet are to define and describe the MD population in the US, define and describe healthcare needs and outcomes for individuals living with MD, and collect information to guide MD care, treatment, and policy.
The Centers for Disease Control and Prevention (CDC) funds MD STARnet. Iowa has participated in MD STARnet since 2002, when the federal MD CARE Act authorized the CDC to create an MD surveillance program.
Iowa Data
On behalf of MD STARnet, IRCID conducts surveillance of Iowans who have been diagnosed with one of eight muscular dystrophies. These de-identified data are pooled with data from the other 6 MD STARnet sites to provide population-based data for research purposes.
Research
MD STARnet is the only research program designed to collect health information on individuals with muscular dystrophy living in specific areas of the United States. 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 life.