Muscular dystrophy surveillance tracking and research network (MD STARnet): Case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy

Katherine D. Mathews, Chris Cunniff, Jiji R. Kantamneni, Emma Ciafaloni, Timothy Miller, Dennis Matthews, Valerie Cwik, Charlotte Druschel, Lisa Miller, F. John Meaney, John Sladky, Paul A. Romitti

Research output: Contribution to journalArticlepeer-review

44 Scopus citations

Abstract

The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) is a multisite collaboration to determine the prevalence of childhood-onset Duchenne/Becker muscular dystrophy and to characterize health care and health outcomes in this population. MD STARnet uses medical record abstraction to identify patients with Duchenne/Becker muscular dystrophy born January 1, 1982 or later who resided in 1 of the participating sites. Critical diagnostic elements of each abstracted record are reviewed independently by >4 clinicians and assigned to 1 of 6 case definition categories (definite, probable, possible, asymptomatic, female, not Duchenne/Becker muscular dystrophy) by consensus. As of November 2009, 815 potential cases were reviewed. Of the cases included in analysis, 674 (82%) were either "definite" or "probable" Duchenne/Becker muscular dystrophy. These data reflect a change in diagnostic testing, as case assignment based on genetic testing increased from 67% in the oldest cohort (born 1982-1987) to 94% in the cohort born 2004 to 2009.

Original languageEnglish (US)
Pages (from-to)1098-1102
Number of pages5
JournalJournal of Child Neurology
Volume25
Issue number9
DOIs
StatePublished - Sep 2010

Keywords

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • diagnostic testing
  • dystrophin

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Clinical Neurology

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