title: The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology.
abstract: BACKGROUND
  This report focuses on the common protocol developed by the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) for population-based surveillance of Duchenne and Becker muscular dystrophy (DBMD) among 4 states (Arizona, Colorado, Iowa, and New York).
  
  
  METHODS
  The network sites have developed a case definition and surveillance protocol along with software applications for medical record abstraction, clinical review, and pooled data. Neuromuscular specialists at each site review the pooled data to determine if a case meets the case criteria. Sources of potential cases of DBMD include neuromuscular specialty clinics, service sites for children with special healthcare needs, and hospital discharge databases. Each site also adheres to a common information assurance protocol.
  
  
  RESULTS
  A population-based surveillance system for DBMD was created and implemented in participating states.
  
  
  CONCLUSIONS
  The development and implementation of the population-based system will allow for the collection of information that is intended to provide a greater understanding of DBMD prevalence and health outcomes.
authors.affiliation: Colorado Department of Public Health and Environment, Denver, Colorado 80246-1530, USA. lisa.miller@state.co.us
authors.forename: Lisa A
authors.initials: LA
authors.lastname: Miller
authors.forename: Paul A
authors.initials: PA
authors.lastname: Romitti
authors.forename: Christopher
authors.initials: C
authors.lastname: Cunniff
authors.forename: Charlotte
authors.initials: C
authors.lastname: Druschel
authors.forename: Katherine D
authors.initials: KD
authors.lastname: Mathews
authors.forename: F John
authors.initials: FJ
authors.lastname: Meaney
authors.forename: Dennis
authors.initials: D
authors.lastname: Matthews
authors.forename: Jiji
authors.initials: J
authors.lastname: Kantamneni
authors.forename: Zhen-Fang
authors.initials: ZF
authors.lastname: Feng
authors.forename: Nancy
authors.initials: N
authors.lastname: Zemblidge
authors.forename: Timothy M
authors.initials: TM
authors.lastname: Miller
authors.forename: Jennifer
authors.initials: J
authors.lastname: Andrews
authors.forename: Deborah
authors.initials: D
authors.lastname: Fox
authors.forename: Emma
authors.initials: E
authors.lastname: Ciafaloni
authors.forename: Shree
authors.initials: S
authors.lastname: Pandya
authors.forename: April
authors.initials: A
authors.lastname: Montgomery
authors.forename: Aileen
authors.initials: A
authors.lastname: Kenneson
mesh_terms: D000043:Abstracting and Indexing / Q000379:methods*; D000293:Adolescent; D000328:Adult; D001130:Arizona / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D002985:Clinical Protocols / Q000592:standards*; D003120:Colorado / Q000453:epidemiology; D003625:Data Collection / Q000379:methods*; D005260:Female; D006801:Humans; D007484:Iowa / Q000453:epidemiology; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000175:diagnosis / Q000453:epidemiology*; D009518:New York / Q000453:epidemiology; D011159:Population Surveillance / Q000379:methods*; D015995:Prevalence