The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Surveillance methodology

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Wednesday, October 11, 2006
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
Journal Title: 
Defects Research Part A: Clinical and Molecular Teratology


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).


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.


A population‐based surveillance system for DBMD was created and implemented in participating states.


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. Birth Defects Research (Part A) 2006. © 2006 Wiley‐Liss, Inc.

CHEEC Project: 

Miller, Lisa A., Paul A. Romitti, Christopher Cunniff, Charlotte Druschel, Katherine D. Mathews, F. John Meaney, Dennis Matthews et al. "The muscular dystrophy surveillance tracking and research network (MD STARnet): Surveillance methodology." Birth Defects Research Part A: Clinical and Molecular Teratology 76, no. 11 (2006): 793-797. DOI: 10.1002/bdra.20279