The "Muscular Dystrophy Surveillance Tracking and Research Network" (MD STARnet) grant will enable Steele Center co-investigators Christopher Cunniff, MD, professor of Pediatrics and chief of the Section of Medical and Molecular Genetics, and John Meaney, PhD, research associate professor of Pediatrics, to identify children and young adults in Arizona with Duchenne and Becker Muscular Dystrophy (DBMD), to develop long-term follow-up and tracking of all those identified with DBMD, and to describe the treatments and medical outcomes of these patients.
"Because people with DBMD are being treated in different settings and by many types of medical specialists, there is no central database that can give us this information," Dr. Cunniff says. "This information gives us a crucial starting point for understanding the health and educational needs of the population, and will enable us to identify the earliest signs that result in diagnosis and referral. With earlier diagnosis and multidisciplinary care, we will have the potential to provide better long-term outcomes."
"Research has shown that population-based surveillance for genetic disorders is an effective first step to clinical studies that aim to improve outcomes. The data we will gather will provide vital insight into whether the severity of DBMD is influenced by the type of care children receive and by the type of genetic mutation the child has," says Dr. Meaney. "Ultimately, we hope it will help us determine the most effective practices for these patients."
