Iowa has been involved in MD STARnet since 2002, when it was developed in response to the MD CARE Act of 2001. The first phase of MD STARnet focused on the most common muscular dystrophies, Duchenne muscular dystrophy and Becker muscular dystrophies. Phase I identified Iowans who were diagnosed with Duchenne or Becker muscular dystrophies and were born on or after January 1, 1982 through December 31, 2011. The network collected, analyzed, and published MD surveillance data, which lead to an improved understanding of Duchenne and Becker MDs surrounding topics such as prevalence, survival/mortality, delays in diagnosis, disparities in diagnosis and care received, and association of treatments on disease progression.

Phase I of MD STARnet

During Phase II of MD STARnet, surveillance of muscular dystrophies expanded to include myotonic dystrophy, facioscapulohumeral MD, limb-girdle MD, congenital DM, Emory-Dreifuss MD distal MD, and oculopharyngeal MD. Phase II identified Iowans who were diagnosed with these MDs and had a health encounter between January 1, 2007 through December 31, 2011. Phase II aimed to estimate the prevalence of these additional MD types and improve the understanding of sociodemographic and clinical characteristics of individuals with these MDs.

Phase II of MD STARnet