Document Detail


The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology.
MedLine Citation:
PMID:  17036307     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
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:
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
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Publication Detail:
Type:  Journal Article; Research Support, U.S. Gov't, P.H.S.    
Journal Detail:
Title:  Birth defects research. Part A, Clinical and molecular teratology     Volume:  76     ISSN:  1542-0752     ISO Abbreviation:  Birth Defects Res. Part A Clin. Mol. Teratol.     Publication Date:  2006 Nov 
Date Detail:
Created Date:  2006-11-14     Completed Date:  2007-01-23     Revised Date:  2007-11-15    
Medline Journal Info:
Nlm Unique ID:  101155107     Medline TA:  Birth Defects Res A Clin Mol Teratol     Country:  United States    
Other Details:
Languages:  eng     Pagination:  793-7     Citation Subset:  IM    
Affiliation:
Colorado Department of Public Health and Environment, Denver, Colorado 80246-1530, USA. lisa.miller@state.co.us
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MeSH Terms
Descriptor/Qualifier:
Abstracting and Indexing as Topic / methods*
Adolescent
Adult
Arizona / epidemiology
Child
Child, Preschool
Clinical Protocols / standards*
Colorado / epidemiology
Data Collection / methods*
Female
Humans
Iowa / epidemiology
Male
Muscular Dystrophy, Duchenne / diagnosis,  epidemiology*
New York / epidemiology
Population Surveillance / methods*
Prevalence
Grant Support
ID/Acronym/Agency:
CCU822309//PHS HHS

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine


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