• Pediatrics · Mar 2015

    Multicenter Study

    Prevalence of Duchenne and Becker muscular dystrophies in the United States.

    • Paul A Romitti, Yong Zhu, Soman Puzhankara, Katherine A James, Sarah K Nabukera, Gideon K D Zamba, Emma Ciafaloni, Christopher Cunniff, Charlotte M Druschel, Katherine D Mathews, Dennis J Matthews, F John Meaney, Jennifer G Andrews, Kristin M Caspers Conway, Deborah J Fox, Natalie Street, Melissa M Adams, Julie Bolen, and MD STARnet.
    • The University of Iowa, Iowa City, Iowa; paul-romitti@uiowa.edu.
    • Pediatrics. 2015 Mar 1; 135 (3): 513-21.

    ObjectiveTo estimate prevalence of childhood-onset Duchenne and Becker muscular dystrophies (DBMD) in 6 sites in the United States by race/ethnicity and phenotype (Duchenne muscular dystrophy [DMD] or Becker muscular dystrophy [BMD]).MethodsIn 2002, the Centers for Disease Control and Prevention established the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to conduct longitudinal, population-based surveillance and research of DBMD in the United States. Six sites conducted active, multiple-source case finding and record abstraction to identify MD STARnet cases born January 1982 to December 2011. We used cross-sectional analyses to estimate prevalence of DBMD per 10 000 boys, ages 5 to 9 years, for 4 quinquennia (1991-1995, 1996-2000, 2001-2005, and 2006-2010) and prevalence per 10 000 male individuals, ages 5 to 24 years, in 2010. Prevalence was also estimated by race/ethnicity and phenotype.ResultsOverall, 649 cases resided in an MD STARnet site during ≥1 quinquennia. Prevalence estimates per 10 000 boys, ages 5 to 9 years, were 1.93, 2.05, 2.04, and 1.51, respectively, for 1991-1995, 1996-2000, 2001-2005, and 2006-2010. Prevalence tended to be higher for Hispanic individuals than non-Hispanic white or black individuals, and higher for DMD than BMD. In 2010, prevalence of DBMD was 1.38 per 10 000 male individuals, ages 5 to 24 years.ConclusionsWe present population-based prevalence estimates for DBMD in 6 US sites. Prevalence differed by race/ethnicity, suggesting potential cultural and socioeconomic influences in the diagnosis of DBMD. Prevalence also was higher for DMD than BMD. Continued longitudinal surveillance will permit us to examine racial/ethnic and socioeconomic differences in treatment and outcomes for MD STARnet cases.Copyright © 2015 by the American Academy of Pediatrics.

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