{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,8]],"date-time":"2026-05-08T10:57:35Z","timestamp":1778237855769,"version":"3.51.4"},"reference-count":31,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2020,7,24]],"date-time":"2020-07-24T00:00:00Z","timestamp":1595548800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Birth Defects Research"],"published-print":{"date-parts":[[2021,4,15]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Data on muscular dystrophies (MDs), a heterogeneous group of heritable diseases hallmarked by progressive muscle deterioration, are scarce.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>We describe cross\u2010sectional sociodemographic and clinical characteristics of individuals with congenital, distal, Emery\u2010Dreifuss, facioscapulohumeral, limb\u2010girdle, myotonic, or oculopharyngeal MD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The study was conducted in four sites (Arizona, Colorado, Iowa, and 12 western New York counties) as a pilot expansion of the Muscular Dystrophy Surveillance, Tracking and Research Network, funded by the Centers for Disease Control and Prevention. MDs were detected in healthcare facilities and administrative data sources using International Classification of Disease codes. Our sample contains 1,723 individuals with a MD diagnosis and a healthcare encounter between January 1, 2007 and December 31, 2011.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results and Conclusions<\/jats:title><jats:p>Individuals were mostly non\u2010Hispanic and white. Median ages ranged from 9.2 to 66.0\u2009years. Most (98%) had health insurance. The proportion of individuals who were disabled or unable to work increased with age (range: 8.6\u201346.4%). People with limb\u2010girdle MD aged <jats:styled-content>\u226518<\/jats:styled-content> years were more likely to be nonambulatory (range: 24.5\u201344.7%). The percentages of individuals with documented clinical interventions during the surveillance period were low. The most common cause of death was respiratory causes (46.3\u201357.1%); an ICD\u201010 code for MD (G71.1 or G71.0) was reported for nearly one\u2010half. Our findings show wide variability in sociodemographic and clinical characteristics across MDs.<\/jats:p><\/jats:sec>","DOI":"10.1002\/bdr2.1764","type":"journal-article","created":{"date-parts":[[2020,7,25]],"date-time":"2020-07-25T06:58:28Z","timestamp":1595660308000},"page":"560-569","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Characterization of individuals with selected muscular dystrophies from the expanded pilot of the Muscular Dystrophy Surveillance, Tracking and Research Network (<scp>MD STARnet<\/scp>) in the United States"],"prefix":"10.1002","volume":"113","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5621-4057","authenticated-orcid":false,"given":"Bailey","family":"Wallace","sequence":"first","affiliation":[{"name":"Oak Ridge Institute for Science and Education  Atlanta Georgia USA"},{"name":"Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K. Tiffany","family":"Smith","sequence":"additional","affiliation":[{"name":"Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities  Atlanta Georgia USA"},{"name":"Carter Consulting, Inc.  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shiny","family":"Thomas","sequence":"additional","affiliation":[{"name":"New York State Department of Health  Albany New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristin M.","family":"Conway","sequence":"additional","affiliation":[{"name":"Department of Epidemiology The University of Iowa  Iowa City Iowa USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christina","family":"Westfield","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Arizona  Tucson Arizona USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer G.","family":"Andrews","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Arizona  Tucson Arizona USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard O.","family":"Weinert","sequence":"additional","affiliation":[{"name":"Colorado Department of Public Health and Environment (CDPHE)  Denver Colorado USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thuy Quynh N.","family":"Do","sequence":"additional","affiliation":[{"name":"Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities  Atlanta Georgia USA"},{"name":"Bristol Meyers Squibb  Lawrenceville New Jersey USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Natalie","family":"Street","sequence":"additional","affiliation":[{"name":"Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,7,24]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000531"},{"key":"e_1_2_9_3_1","unstructured":"ASPE. 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