title: Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy.
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.
authors.affiliation: Department of Pediatrics, Roy and Lucille Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA. katherine-mathews@uiowa.edu
authors.forename: Katherine D
authors.initials: KD
authors.lastname: Mathews
authors.forename: Chris
authors.initials: C
authors.lastname: Cunniff
authors.forename: Jiji R
authors.initials: JR
authors.lastname: Kantamneni
authors.forename: Emma
authors.initials: E
authors.lastname: Ciafaloni
authors.forename: Timothy
authors.initials: T
authors.lastname: Miller
authors.forename: Dennis
authors.initials: D
authors.lastname: Matthews
authors.forename: Valerie
authors.initials: V
authors.lastname: Cwik
authors.forename: Charlotte
authors.initials: C
authors.lastname: Druschel
authors.forename: Lisa
authors.initials: L
authors.lastname: Miller
authors.forename: F John
authors.initials: FJ
authors.lastname: Meaney
authors.forename: John
authors.initials: J
authors.lastname: Sladky
authors.forename: Paul A
authors.initials: PA
authors.lastname: Romitti
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003299:Cooperative Behavior; D003430:Cross-Sectional Studies; D003937:Diagnosis, Differential; D005260:Female; D020022:Genetic Predisposition to Disease / Q000235:genetics; D005820:Genetic Testing / Q000379:methods / Q000639:trends*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000175:diagnosis* / Q000453:epidemiology* / Q000235:genetics; D011159:Population Surveillance / Q000379:methods*; D015995:Prevalence; D012189:Retrospective Studies; D055815:Young Adult
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