title: Prevalence of Duchenne and Becker muscular dystrophies in the United States.
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.
authors: The University of Iowa, Iowa City, Iowa; paul-romitti@uiowa.edu.
authors: Paul A
authors: PA
authors: Romitti
authors: The University of Iowa, Iowa City, Iowa;
authors: Yong
authors: Y
authors: Zhu
authors: The University of Iowa, Iowa City, Iowa;
authors: Soman
authors: S
authors: Puzhankara
authors: University of Colorado, Aurora, Colorado;
authors: Katherine A
authors: KA
authors: James
authors: The University of Iowa, Iowa City, Iowa;
authors: Sarah K
authors: SK
authors: Nabukera
authors: The University of Iowa, Iowa City, Iowa;
authors: Gideon K D
authors: GK
authors: Zamba
authors: University of Rochester, Rochester, New York;
authors: Emma
authors: E
authors: Ciafaloni
authors: The University of Arizona, Tucson, Arizona;
authors: Christopher
authors: C
authors: Cunniff
authors: New York State Department of Health, Albany, New York; State University of New York, Albany, Rensselaer, New York; and.
authors: Charlotte M
authors: CM
authors: Druschel
authors: The University of Iowa, Iowa City, Iowa;
authors: Katherine D
authors: KD
authors: Mathews
authors: University of Colorado, Aurora, Colorado;
authors: Dennis J
authors: DJ
authors: Matthews
authors: The University of Arizona, Tucson, Arizona;
authors: F John
authors: FJ
authors: Meaney
authors: The University of Arizona, Tucson, Arizona;
authors: Jennifer G
authors: JG
authors: Andrews
authors: The University of Iowa, Iowa City, Iowa;
authors: Kristin M Caspers
authors: KM
authors: Conway
authors: New York State Department of Health, Albany, New York;
authors: Deborah J
authors: DJ
authors: Fox
authors: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors: Natalie
authors: N
authors: Street
authors: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors: Melissa M
authors: MM
authors: Adams
authors: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors: Julie
authors: J
authors: Bolen
mesh_terms: D002648:Child; D003430:Cross-Sectional Studies; D005006:Ethnicity; D005260:Female; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000208:ethnology*; D011159:Population Surveillance; D015995:Prevalence; D012189:Retrospective Studies; D014481:United States / Q000453:epidemiology
keywords: Becker muscular dystrophy; Duchenne muscular dystrophy; ethnicity; population surveillance; prevalence