Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population-based surveillance of major muscular dystrophies at four U.S. sites, 2007-2011

ThuyQuynh N Do; Natalie Street; Jennifer Donnelly; Melissa M Adams; Christopher Cunniff; Deborah J Fox; Richard O Weinert; Joyce Oleszek; Paul A Romitti; Christina P Westfield; Julie Bolen; Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

doi:10.1002/bdr2.1371

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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

Journal article

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Peer reviewed

Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population-based surveillance of major muscular dystrophies at four U.S. sites, 2007-2011

ThuyQuynh N Do, Natalie Street, Jennifer Donnelly, Melissa M Adams, Christopher Cunniff, Deborah J Fox, Richard O Weinert, Joyce Oleszek, Paul A Romitti, Christina P Westfield, …

Birth defects research, Vol.110(19), pp.1404-1411

11/15/2018

DOI: 10.1002/bdr2.1371

PMCID: PMC6265066

PMID: 30070776

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https://www.ncbi.nlm.nih.gov/pmc/articles/6265066View

Open Access

Abstract

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. 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. 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). 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.

Public Health

Registries

United States

Prevalence

Humans

Middle Aged

Male

Muscular Dystrophy, Duchenne - epidemiology

Arizona - epidemiology

Epidemiological Monitoring

Muscular Dystrophies - epidemiology

Adolescent

Muscular Dystrophies - classification

Adult

Female

Iowa - epidemiology

Muscular Dystrophies - diagnosis

Retrospective Studies

New York - epidemiology

Child

Colorado - epidemiology

Population Surveillance - methods

Databases, Factual

Muscular Dystrophy, Duchenne - diagnosis

Details

Title: Subtitle: Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population-based surveillance of major muscular dystrophies at four U.S. sites, 2007-2011
Creators: ThuyQuynh N Do - Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia
Natalie Street - Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia
Jennifer Donnelly - Colorado Department of Public Health & Environment, Denver, Colorado
Melissa M Adams - RTI International, Atlanta, Georgia
Christopher Cunniff - Weill Cornell Medical College, New York, New York
Deborah J Fox - Bureau of Environmental and Occupational Epidemiology, New York State Department of Health, Albany, New York
Richard O Weinert - Colorado Department of Public Health & Environment, Denver, Colorado
Joyce Oleszek - University of Colorado, Denver and Children's Hospital, Aurora, Colorado
Paul A Romitti - Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa
Christina P Westfield - Bureau of Environmental and Occupational Epidemiology, New York State Department of Health, Albany, New York
Julie Bolen - Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia
Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)
Resource Type: Journal article
Publication Details: Birth defects research, Vol.110(19), pp.1404-1411
DOI: 10.1002/bdr2.1371
PMID: 30070776
PMCID: PMC6265066
NLM abbreviation: Birth Defects Res
ISSN: 2472-1727
eISSN: 2472-1727
Publisher: Wiley; United States
Grant note: P30 ES005605 / NIEHS NIH HHS DD000830 / CDC HHS U01 DD000830 / NCBDD CDC HHS CC999999 / Intramural CDC HHS DD000832 / CDC HHS U01 DD000835 / NCBDD CDC HHS DD000837 / CDC HHS DD000834 / CDC HHS U01 DD000831 / NCBDD CDC HHS U01 DD000836 / NCBDD CDC HHS
Language: English
Date published: 11/15/2018
Academic Unit: Epidemiology; Biostatistics
Record Identifier: 9983995128602771

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