Presented at the 2nd National Center on Birth Defects and Developmental Disabilities Conference, July 25–27, 2004, Atlanta, Georgia.
Article first published online: 11 OCT 2006
Copyright © 2006 Wiley-Liss, Inc.
Birth Defects Research Part A: Clinical and Molecular Teratology
Special Issue: Eighth Annual Report of the National Birth Defects Prevention Network's 2006 Congenital Malformations Surveillance Report
Volume 76, Issue 11, pages 793–797, November 2006
How to Cite
Miller, L. A., Romitti, P. A., Cunniff, C., Druschel, C., Mathews, K. D., Meaney, F. J., Matthews, D., Kantamneni, J., Feng, Z.-F., Zemblidge, N., Miller, T. M., Andrews, J., Fox, D., Ciafaloni, E., Pandya, S., Montgomery, A. and Kenneson, A. (2006), The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Surveillance methodology. Birth Defects Research Part A: Clinical and Molecular Teratology, 76: 793–797. doi: 10.1002/bdra.20279
To appear in print in the Nocvember 2006 issue of Birth Defects Research Part A as part of the “Eighth Annual Report of the National Birth Defects Prevention Network's 2006 Congenital Malformations Surveillance Report.”
The contents are solely the responsibility of the authors and do not necessarily represent the official views of The Centers for Disease Control and Prevention.
- Issue published online: 8 NOV 2006
- Article first published online: 11 OCT 2006
- Manuscript Accepted: 12 MAY 2006
- Manuscript Revised: 8 MAY 2006
- Manuscript Received: 9 JAN 2006
- Centers for Disease Control and Prevention. Grant Number: CCU822309
- muscular dystrophy;
- health outcomes
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. Birth Defects Research (Part A) 2006. © 2006 Wiley-Liss, Inc.