The muscular dystrophy surveillance tracking and research network (MD STARnet): Surveillance methodology

Lisa A. Miller, Paul A. Romitti, Christopher Cunniff, Charlotte Druschel, Katherine D. Mathews, F. John Meaney, Dennis Matthews, Jiji Kantamneni, Zhen Fang Feng, Nancy Zemblidge, Timothy M. Miller, Jennifer Andrews, Deborah Fox, Emma Ciafaloni, Shree Pandya, April Montgomery, Aileen Kenneson

Research output: Contribution to journalArticlepeer-review

66 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)793-797
Number of pages5
JournalBirth Defects Research Part A - Clinical and Molecular Teratology
Volume76
Issue number11
DOIs
StatePublished - Nov 2006

Keywords

  • Health outcomes
  • Muscular dystrophy
  • Prevalence
  • Surveillance

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Embryology
  • Developmental Biology

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