Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Feasibility of Expansion to other Muscular Dystrophies Since 2002, Colorado Department of Public Health and Environment (CDPHE) has been part of a multi-state (Arizona, Colorado, Iowa, New York, Georgia and Hawaii) cooperative agreement with the Centers for Disease Control and Prevention, the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) that models the infrastructure necessary to understand the epidemiology of genetic disorders from a public health perspective and gathers data about issues related to outcomes and health services. CDPHE conducts active surveillance for Duchenne and Becker muscular dystrophy (DBMD) under public health authority and has strong, longstanding relationships with the organizations/sources that are used to identify cases of DBMD. CDPHE has partnered with The Muscle Clinic at The Children's Hospital (the MDA Clinic) since the inception of MD STARnet. In addition to this successful collaboration, we now have been joined by staff from the University of Colorado School of Public Health who have added analytic and publication expertise to the project in the past year. As part of MD STARnet, we have conducted population-based surveillance and epidemiologic research of DBMD and published several articles to disseminate the findings of this work. These articles have covered areas such as age at diagnosis, development of a standard surveillance case definition, use of steroids, and prevalence and mortality and have contributed to the scientific and clinical understanding of DBMD in the United States.
The Specific Aims and Activities in this proposal will allow the MD STARnet sites to: 1) continue to collect focused data and publish reports on the MDSTARnet population to further inform scientific and clinical questions about DBMD, including information about survival, needs, quality of life, and the important transition period for adolescents and adults with these conditions;2) collect and disseminate important 'lessons learned'from the first network in the United States to design and implement population-based surveillance and research for these conditions;3) expand this successful model to determine the prevalence, demographics, healthcare coverage, and locations of care for seven other muscular dystrophies (myotonic dystrophy, congenital, Emery-Dreifuss, facioscapulo-humeral, limb-girdle, distal, and oculopharyngeal) and evaluate and report the results of this activity. Using this existing model and Network is an efficient way to gain important insights about a heterogeneous and complex group of conditions.
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) models the infrastructure necessary to understand the epidemiology of genetic disorders from a public health perspective and gathers data about issues related to outcomes and health services. The goal is to improve access to care and health outcomes of individuals with muscular dystrophies.
| Do, ThuyQuynh N; Street, Natalie; Donnelly, Jennifer et al. (2018) Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population-based surveillance of major muscular dystrophies at four U.S. sites, 2007-2011. Birth Defects Res 110:1404-1411 |
