| The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology. | |
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MedLine Citation:
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PMID: 17036307 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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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. |
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Authors:
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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:
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Type: Journal Article; Research Support, U.S. Gov't, P.H.S. |
Journal Detail:
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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:
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Created Date: 2006-11-14 Completed Date: 2007-01-23 Revised Date: 2007-11-15 |
Medline Journal Info:
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Nlm Unique ID: 101155107 Medline TA: Birth Defects Res A Clin Mol Teratol Country: United States |
Other Details:
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Languages: eng Pagination: 793-7 Citation Subset: IM |
Affiliation:
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Colorado Department of Public Health and Environment, Denver, Colorado 80246-1530, USA. lisa.miller@state.co.us |
Export Citation:
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| MeSH Terms | |
Descriptor/Qualifier:
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Abstracting and Indexing as Topic
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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:
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CCU822309//PHS HHS |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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