Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy

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

doi:10.1177/0883073810371001

Back

Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy

Journal article

Peer reviewed

Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy

Katherine D Mathews, Chris Cunniff, Jiji R Kantamneni, Emma Ciafaloni, Timothy Miller, Dennis Matthews, Valerie Cwik, Charlotte Druschel, Lisa Miller, F John Meaney, …

Journal of child neurology, Vol.25(9), pp.1098-1102

09/2010

DOI: 10.1177/0883073810371001

PMCID: PMC3674568

PMID: 20817884

Files and links (1)

url

https://www.ncbi.nlm.nih.gov/pmc/articles/3674568View

Open Access

Abstract

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.

Diagnosis, Differential

Genetic Predisposition to Disease - genetics

Prevalence

Cross-Sectional Studies

Humans

Child, Preschool

Cooperative Behavior

Infant

Male

Muscular Dystrophy, Duchenne - epidemiology

Genetic Testing - methods

Young Adult

Adolescent

Adult

Female

Retrospective Studies

Genetic Testing - trends

Muscular Dystrophy, Duchenne - genetics

Child

Infant, Newborn

Population Surveillance - methods

Cohort Studies

Muscular Dystrophy, Duchenne - diagnosis

Details

Title: Subtitle: Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definition in surveillance for childhood-onset Duchenne/Becker muscular dystrophy
Creators: Katherine D Mathews - Department of Pediatrics, Roy and Lucille Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA. katherine-mathews@uiowa.edu
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
Resource Type: Journal article
Publication Details: Journal of child neurology, Vol.25(9), pp.1098-1102
DOI: 10.1177/0883073810371001
PMID: 20817884
PMCID: PMC3674568
NLM abbreviation: J Child Neurol
ISSN: 0883-0738
eISSN: 1708-8283
Publisher: United States
Grant note: 5R13NS040925-09 / NINDS NIH HHS U01 DD000189 / NCBDD CDC HHS R13 NS040925 / NINDS NIH HHS
Language: English
Date published: 09/2010
Academic Unit: Neurology; Stead Family Department of Pediatrics; Epidemiology; Iowa Neuroscience Institute; Biostatistics; Neurology (Pediatrics)
Record Identifier: 9983996194802771

Metrics

18 Record Views

60 Times Cited - Web of Science