Document Detail


Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy.
MedLine Citation:
PMID:  20817884     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) is a multisite collaboration to determine the prevalence of childhood-onset Duchenne/Becker muscular dystrophy and to characterize health care and health outcomes in this population. MD STARnet uses medical record abstraction to identify patients with Duchenne/Becker muscular dystrophy born January 1, 1982 or later who resided in 1 of the participating sites. Critical diagnostic elements of each abstracted record are reviewed independently by >4 clinicians and assigned to 1 of 6 case definition categories (definite, probable, possible, asymptomatic, female, not Duchenne/Becker muscular dystrophy) by consensus. As of November 2009, 815 potential cases were reviewed. Of the cases included in analysis, 674 (82%) were either ''definite'' or ''probable'' Duchenne/Becker muscular dystrophy. These data reflect a change in diagnostic testing, as case assignment based on genetic testing increased from 67% in the oldest cohort (born 1982-1987) to 94% in the cohort born 2004 to 2009.
Authors:
Katherine D Mathews; Chris Cunniff; Jiji R Kantamneni; Emma Ciafaloni; Timothy Miller; Dennis Matthews; Valerie Cwik; Charlotte Druschel; Lisa Miller; F John Meaney; John Sladky; Paul A Romitti
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Publication Detail:
Type:  Journal Article; Multicenter Study; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't; Research Support, U.S. Gov't, P.H.S.    
Journal Detail:
Title:  Journal of child neurology     Volume:  25     ISSN:  1708-8283     ISO Abbreviation:  J. Child Neurol.     Publication Date:  2010 Sep 
Date Detail:
Created Date:  2010-09-06     Completed Date:  2011-06-01     Revised Date:  2014-03-19    
Medline Journal Info:
Nlm Unique ID:  8606714     Medline TA:  J Child Neurol     Country:  United States    
Other Details:
Languages:  eng     Pagination:  1098-102     Citation Subset:  IM    
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MeSH Terms
Descriptor/Qualifier:
Adolescent
Adult
Child
Child, Preschool
Cohort Studies
Cooperative Behavior
Cross-Sectional Studies
Diagnosis, Differential
Female
Genetic Predisposition to Disease / genetics
Genetic Testing / methods,  trends*
Humans
Infant
Infant, Newborn
Male
Muscular Dystrophy, Duchenne / diagnosis*,  epidemiology*,  genetics
Population Surveillance / methods*
Prevalence
Retrospective Studies
Young Adult
Grant Support
ID/Acronym/Agency:
5R13NS040925-09/NS/NINDS NIH HHS; R13 NS040925/NS/NINDS NIH HHS; U01 DD000189/DD/NCBDD CDC HHS
Comments/Corrections

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