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Tytuł:
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Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population-based surveillance of major muscular dystrophies at four U.S. sites, 2007-2011.
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Autorzy:
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Do TN; Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia.
Street N; Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia.
Donnelly J; Colorado Department of Public Health & Environment, Denver, Colorado.
Adams MM; RTI International, Atlanta, Georgia.
Cunniff C; Weill Cornell Medical College, New York, New York.
Fox DJ; Bureau of Environmental and Occupational Epidemiology, New York State Department of Health, Albany, New York.
Weinert RO; Colorado Department of Public Health & Environment, Denver, Colorado.
Oleszek J; University of Colorado, Denver and Children's Hospital, Aurora, Colorado.
Romitti PA; Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa.
Westfield CP; Bureau of Environmental and Occupational Epidemiology, New York State Department of Health, Albany, New York.
Bolen J; Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia.
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Corporate Authors:
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Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)
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Źródło:
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Birth defects research [Birth Defects Res] 2018 Nov 15; Vol. 110 (19), pp. 1404-1411. Date of Electronic Publication: 2018 Aug 02.
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Typ publikacji:
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Journal Article; Research Support, N.I.H., Extramural; Research Support, U.S. Gov't, P.H.S.
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Język:
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English
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Imprint Name(s):
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Original Publication: Hoboken, N.J. : John Wiley & Sons, Inc.
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MeSH Terms:
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Muscular Dystrophies/*diagnosis
Muscular Dystrophies/*epidemiology
Population Surveillance/*methods
Adolescent ; Adult ; Arizona/epidemiology ; Child ; Colorado/epidemiology ; Databases, Factual ; Epidemiological Monitoring ; Female ; Humans ; Iowa/epidemiology ; Male ; Middle Aged ; Muscular Dystrophies/classification ; Muscular Dystrophy, Duchenne/diagnosis ; Muscular Dystrophy, Duchenne/epidemiology ; New York/epidemiology ; Prevalence ; Public Health ; Registries ; Retrospective Studies ; United States
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References:
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Grant Information:
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P30 ES005605 United States ES NIEHS NIH HHS; U01 DD000830 United States DD NCBDD CDC HHS; DD000837 United States CC CDC HHS; U01 DD000189 United States DD NCBDD CDC HHS; DD000834 United States CC CDC HHS; U01 DD001119 United States DD NCBDD CDC HHS; DD000830 United States CC CDC HHS; U01 DD000835 United States DD NCBDD CDC HHS; U01 DD000836 United States DD NCBDD CDC HHS; U01 DD000831 United States DD NCBDD CDC HHS; DD000832 United States CC CDC HHS; CC999999 United States ImCDC Intramural CDC HHS
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Contributed Indexing:
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Keywords: Clinical Modification (ICD-9-CM) codes; International Classification of Diseases; MD STARnet; Ninth Revision; active surveillance; medical record abstraction; muscular dystrophies; population-based
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Entry Date(s):
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Date Created: 20180803 Date Completed: 20190701 Latest Revision: 20210109
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Update Code:
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20240104
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PubMed Central ID:
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PMC6265066
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DOI:
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10.1002/bdr2.1371
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PMID:
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30070776
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Background: For 10 years, the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) conducted surveillance for Duchenne and Becker muscular dystrophy (DBMD). We piloted expanding surveillance to other MDs that vary in severity, onset, and sources of care.
Methods: Our retrospective surveillance included individuals diagnosed with one of nine eligible MDs before or during the study period (January 2007-December 2011), one or more health encounters, and residence in one of four U.S. sites (Arizona, Colorado, Iowa, or western New York) at any time within the study period. We developed case definitions, surveillance protocols, and software applications for medical record abstraction, clinical review, and data pooling. Potential cases were identified by International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes 359.0, 359.1, and 359.21 and International Classification of Diseases, Tenth Revision (ICD-10) codes G71.0 and G71.1. Descriptive statistics were compared by MD type. Percentage of MD cases identified by each ICD-9-CM code was calculated.
Results: Of 2,862 cases, 32.9% were myotonic, dystrophy 25.8% DBMD, 9.7% facioscapulohumeral MD, and 9.1% limb-girdle MD. Most cases were male (63.6%), non-Hispanic (59.8%), and White (80.2%). About, half of cases were genetically diagnosed in self (39.1%) or family (6.2%). About, half had a family history of MD (48.9%). The hereditary progressive MD code (359.1) was the most common code for identifying eligible cases. The myotonic code (359.21) identified 83.4% of eligible myotonic dystrophy cases (786/943).
Conclusions: MD STARnet is the only multisite, population-based active surveillance system available for MD in the United States. Continuing our expanded surveillance will contribute important epidemiologic and health outcome information about several MDs.
(© 2018 Wiley Periodicals, Inc.)