Centers for Disease Control and Prevention (CDC) – MD STARnet Grant

In 2002, the CDC awarded four sites – Arizona, Colorado, Iowa and New York – cooperative agreements (RFA 02172) to develop a surveillance network, the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet). The overall objectives are: 1) to conduct active, population-based surveillance of DBMD to characterize the epidemiology of DBMD and its complications and 2) to develop long-term follow-up and tracking of children with DBMD to describe the history and outcome of treated cases and/or those cases with treatments not consistent with protocol standards.

The hypothesis guiding this research is that population-based surveillance and integrated research programs are effective in determining the prevalence of DMD/BMD disorders and establishing data on health outcomes and the types of care for these disorders. Research has shown that population-based surveillance for individual disorders is an effective first step to clinical and descriptive studies. Surveillance provides population data as a basis for making comparisons to the samples of individuals with these disorders that respond to questionnaires or clinical studies. The alternative of volunteer-based research in clinic-based populations may produce data that do not reflect the population of individuals with the disorder.
This project will continue through July 1, 2008 and June 30, 2009 under the supervision of Dr. Sydney Pettygrove at the University of Arizona.