Evidence map›Paper›PMID 32710484›Full record

ArticleBirth defects research2021

Characterization of individuals with selected muscular dystrophies from the expanded pilot of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) in the United States.

Bailey Wallace, K Tiffany Smith, Shiny Thomas, Kristin M Conway, Christina Westfield, Jennifer G Andrews, Richard O Weinert, Thuy Quynh N Do, Natalie Street, Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

Abstract read
In one paragraph

Article in Birth defects research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Article
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  6. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Bailey WallaceOak Ridge Institute for Science and Education, Atlanta, Georgia, USA.ORCID 0000-0001-5621-4057
K Tiffany SmithCenters for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia, USA.
Shiny ThomasNew York State Department of Health, Albany, New York, USA.
Kristin M ConwayDepartment of Epidemiology, The University of Iowa, Iowa City, Iowa, USA.
Christina WestfieldDepartment of Pediatrics, University of Arizona, Tucson, Arizona, USA.
Jennifer G AndrewsDepartment of Pediatrics, University of Arizona, Tucson, Arizona, USA.
Richard O WeinertColorado Department of Public Health and Environment (CDPHE), Denver, Colorado, USA.
Thuy Quynh N DoCenters for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia, USA.
Natalie StreetCenters for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia, USA.
Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

Funding

Comp A-MD and Neuromuscular Disorder Surveillance and Research in IowaU01DD001119 · DD · UNIVERSITY OF IOWA · PI ROMITTI, PAUL A · 2014 to 2018
$2.4M
MD STARnet: Feasibility of Expansion to other Muscular DystrophiesU01DD000831 · DD · UNIVERSITY OF IOWA · PI ROMITTI, PAUL A · 2011 to 2013
$2.2M
Component A: Iowa MD STARnet Core SiteU01DD001248 · DD · UNIVERSITY OF IOWA · PI MATHEWS, KATHERINE DIANNE, ROMITTI, PAUL A · 2019 to 2023
$2.0M
Arizona Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnetU01DD000830 · DD · UNIVERSITY OF ARIZONA · PI CUNNIFF, CHRISTOPHER MCCORD · 2011 to 2013
$1.6M
New York MDSTARnet Feasibility of Expansion to other Muscular DystrophiesU01DD000836 · DD · CENTER OF ENVIRONMENTAL HEALTH · PI FOX, DEBORAH · 2011 to 2013
$1.6M
Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): FeasiU01DD000835 · DD · COLORADO STATE DEPT/PUB HLTH & ENVIRONMT · PI HERLIHY, RACHEL WIERZBA · 2011 to 2013
$1.4M
Component C: Iowa MD STARnet Site Data DisseminationU01DD001247 · DD · UNIVERSITY OF IOWA · PI ROMITTI, PAUL A · 2019 to 2023
$400k
Intramural CDC HHS CC999999NCBDD CDC HHS U01 DD000830NCBDD CDC HHS U01 DD000831NCBDD CDC HHS U01 DD000835NCBDD CDC HHS U01 DD000836NCBDD CDC HHS U01 DD001119NCBDD CDC HHS U01 DD001247NCBDD CDC HHS U01 DD001248
6 · The paper itself

Abstract

introductionData on muscular dystrophies (MDs), a heterogeneous group of heritable diseases hallmarked by progressive muscle deterioration, are scarce.

objectiveWe describe cross-sectional sociodemographic and clinical characteristics of individuals with congenital, distal, Emery-Dreifuss, facioscapulohumeral, limb-girdle, myotonic, or oculopharyngeal MD.

methodsThe 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. RESULTS AND

conclusionsIndividuals were mostly non-Hispanic and white. Median ages ranged from 9.2 to 66.0 years. Most (98%) had health insurance. The proportion of individuals who were disabled or unable to work increased with age (range: 8.6-46.4%). People with limb-girdle MD aged ≥18 years were more likely to be nonambulatory (range: 24.5-44.7%). The percentages of individuals with documented clinical interventions during the surveillance period were low. The most common cause of death was respiratory causes (46.3-57.1%); an ICD-10 code for MD (G71.1 or G71.0) was reported for nearly one-half. Our findings show wide variability in sociodemographic and clinical characteristics across MDs.

Indexed as

Muscular Dystrophy, DuchenneAdolescentAdultAgedArizonaChildColoradoCross-Sectional StudiesHumansMiddle AgedPopulation SurveillanceUnited StatesYoung AdultepidemiologyMD STARnetmuscular dystrophypopulation-basedsurveillance

Identifiers

PMID32710484
PMCPMC8114775

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.