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Prevalence of Duchenne and Becker muscular dystrophies in the United States
Journal article   Open access   Peer reviewed

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, …
Pediatrics (Evanston), Vol.135(3), pp.513-521
03/2015
DOI: 10.1542/peds.2014-2044
PMCID: PMC4477633
PMID: 25687144
url
https://doi.org/10.1542/peds.2014-2044View
Published (Version of record) Open Access

Abstract

OBJECTIVE: To 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]). METHODS: In 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. RESULTS: Overall, 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. CONCLUSIONS: We 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.
Muscular Dystrophy, Duchenne - ethnology United States - epidemiology Ethnic Groups Prevalence Cross-Sectional Studies Humans Female Male Retrospective Studies Child Population Surveillance

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