The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology

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

doi:10.1002/bdra.20279

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The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology

Journal article

Open access

Peer reviewed

The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology

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, …

Birth defects research. A Clinical and molecular teratology, Vol.76(11), pp.793-797

11/2006

DOI: 10.1002/bdra.20279

PMCID: PMC5863910

PMID: 17036307

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Abstract

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). 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. A population-based surveillance system for DBMD was created and implemented in participating states. 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.

Abstracting and Indexing as Topic - methods

Prevalence

Humans

Child, Preschool

Clinical Protocols - standards

Male

Muscular Dystrophy, Duchenne - epidemiology

Data Collection - methods

Arizona - epidemiology

Adolescent

Adult

Female

Iowa - epidemiology

New York - epidemiology

Child

Colorado - epidemiology

Population Surveillance - methods

Muscular Dystrophy, Duchenne - diagnosis

Details

Title: Subtitle: The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology
Creators: Lisa A Miller - Colorado Department of Public Health and Environment, Denver, Colorado 80246-1530, USA. lisa.miller@state.co.us
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 - University of Arizona
Jennifer Andrews
Deborah Fox
Emma Ciafaloni
Shree Pandya
April Montgomery - Colorado Department of Public Health and Environment
Aileen Kenneson
Resource Type: Journal article
Publication Details: Birth defects research. A Clinical and molecular teratology, Vol.76(11), pp.793-797
DOI: 10.1002/bdra.20279
PMID: 17036307
PMCID: PMC5863910
NLM abbreviation: Birth Defects Res A Clin Mol Teratol
ISSN: 1542-0752
eISSN: 1542-0760
Publisher: United States
Grant note: CCU822309 / PHS HHS U50 DD722318 / NCBDD CDC HHS
Language: English
Date published: 11/2006
Academic Unit: Neurology; Stead Family Department of Pediatrics; Epidemiology; Iowa Neuroscience Institute; Biostatistics; Neurology (Pediatrics)
Record Identifier: 9983995046102771

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