Duchenne and Becker muscular dystrophies (DBMD) are X-linked disorders presumed to affect 1 in 3,500 male births. These conditions follow a course of progressive muscle weakness leading to death in the late teens to early twenties. As such, the impact of these conditions on medical systems, communities, and families is significant. Through the 'Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001', the United States Congress enacted legislation to provide for research with respect to various forms of muscular dystrophy, including DBMD. A part of this Act authorized the creation of a National Muscular Dystrophy Epidemiology Program, in which the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), provided for a national surveillance program for DBMD for the purpose of carrying out epidemiological activities, including collecting and analyzing information on the number, incidence, correlates, and symptoms of those individuals with DBMD. To fulfill this mandate, in 2002, the CDC awarded four sites - Arizona, Colorado, Iowa and New York - cooperative agreements to develop a surveillance network, the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet). MD STARnet sites have been developing and implementing epidemiologic methods that will lead to a better understanding of DBMD over the past four years. For the current project, the Colorado Department of Public Health and Environment proposes to continue as a participating MD STARnet site to: 1) Generate population-based prevalence and incidence rates for DBMD in the United States with particular attention to differences in rates over time and by race/ethnicity;2) Identify the early signs and symptoms of DBMD;3) Describe the medical and social services received and quality of life of families of patients with DBMD and whether these vary by race/ethnicity and socioeconomic status;and 4) Investigate whether the severity or course of DBMD is influenced by variation in type of care received and by type of mutation identified. We believe that the accomplishment of the objectives and activities above will be meaningful to both clinicians and families and will help to guide the development of standards of care for muscular dystrophy.

National Institute of Health (NIH)
Centers for Disease Control and Prevention (NCBDD)
Research Project--Cooperative Agreements (U01)
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Special Emphasis Panel (ZCD1-ZDQ (12))
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Brown, Michael
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Colorado State Department/Pub Health & Environment
United States
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Soim, Aida; Smith, Michael G; Kwon, Jennifer M et al. (2018) Is There a Delay in Diagnosis of Duchenne Muscular Dystrophy Among Preterm-Born Males? J Child Neurol 33:537-545
Conway, Kristin M; Ciafaloni, Emma; Matthews, Dennis et al. (2018) Application of the International Classification of Functioning, Disability and Health system to symptoms of the Duchenne and Becker muscular dystrophies. Disabil Rehabil 40:1773-1780
Latimer, Rebecca; Street, Natalie; Conway, Kristin Caspers et al. (2017) Secondary Conditions Among Males With Duchenne or Becker Muscular Dystrophy. J Child Neurol 32:663-670
Gissy, Jacob J; Johnson, Teresa; Fox, Deborah J et al. (2017) Delayed onset of ambulation in boys with Duchenne muscular dystrophy: Potential use as an endpoint in clinical trials. Neuromuscul Disord 27:905-910
Frishman, Natalia; Conway, Kristin Caspers; Andrews, Jennifer et al. (2017) Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources. Health Qual Life Outcomes 15:33
Ciafaloni, Emma; Kumar, Anil; Liu, Ke et al. (2016) Age at onset of first signs or symptoms predicts age at loss of ambulation in Duchenne and Becker Muscular Dystrophy: Data from the MD STARnet. J Pediatr Rehabil Med 9:5-11
Lamb, Molly M; West, Nancy A; Ouyang, Lijing et al. (2016) Corticosteroid Treatment and Growth Patterns in Ambulatory Males with Duchenne Muscular Dystrophy. J Pediatr 173:207-213.e3
Kim, Sunkyung; Campbell, Kimberly A; Fox, Deborah J et al. (2015) Corticosteroid Treatments in Males With Duchenne Muscular Dystrophy: Treatment Duration and Time to Loss of Ambulation. J Child Neurol 30:1275-80
West, Nancy A; Yang, Michele L; Weitzenkamp, David A et al. (2013) Patterns of growth in ambulatory males with Duchenne muscular dystrophy. J Pediatr 163:1759-1763.e1
Holtzer, Caleb; Meaney, F John; Andrews, Jennifer et al. (2011) Disparities in the diagnostic process of Duchenne and Becker muscular dystrophy. Genet Med 13:942-7