Evidence map›Paper›PMID 27726857›Full record

ArticleThe Annals of thoracic surgery2017

Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery.

Meena Nathan, Marshall L Jacobs, J William Gaynor, Jane W Newburger, Carolyn Dunbar Masterson, Linda M Lambert, Danielle Hollenbeck-Pringle, Felicia L Trachtenberg, Owen White, Brett R Anderson and 12 more

Abstract readMulticenter Study
In one paragraph

Article in The Annals of thoracic surgery, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing 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

12 citing papers in PubMed.

  1. Trial
  2. Observational
  3. Article
  4. Article
  5. Review
  6. Article
  7. The Pediatric Heart Network Residual Lesion Score Study: Design and objectives.The Journal of thoracic and cardiovascular surgery · 2020
    Article
  8. Article
  9. Review
  10. Observational
  11. Registry Data Coordinator (RDC): a Proper Accessible Strategy for Improving Road Traffic Injury (RTI) Hospital Based Trauma Registry Systems in Developing Countries and Low Income Countries.Acta informatica medica : AIM : journal of the Society for Medical Informatics of Bosnia & Herzegovina : casopis Drustva za medicinsku informatiku BiH · 2018
    Article
  12. Association of Surgeon Age and Experience With Congenital Heart Surgery Outcomes.Circulation. Cardiovascular quality and outcomes · 2017
    Article
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

22 authors.

Meena NathanDepartment of Cardiac Surgery, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts. Electronic address: meena.nathan@cardio.chboston.org.
Marshall L JacobsDivision of Cardiac Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland.
J William GaynorDivision of Cardiothoracic Surgery, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Jane W NewburgerDepartment of Cardiology, Boston Children's Hospital, Department of Surgery and Pediatrics, Harvard Medical School, Boston, Massachusetts.
Carolyn Dunbar MastersonDepartment of Cardiology, Boston Children's Hospital, Department of Surgery and Pediatrics, Harvard Medical School, Boston, Massachusetts.
Linda M LambertDivision of Cardiothoracic Surgery, Primary Children's Hospital/University of Utah, Salt Lake City, Utah.
Danielle Hollenbeck-PringleNew England Research Institutes, Watertown, Massachusetts.
Felicia L TrachtenbergNew England Research Institutes, Watertown, Massachusetts.
Owen WhiteCardioAccess Inc, Fort Lauderdale, Florida.
Brett R AndersonDepartment of Pediatrics, Division of Pediatric Cardiology, Morgan Stanley Hospital, Columbia Presbyterian University, New York, New York.
Margaret C BellNew England Research Institutes, Watertown, Massachusetts.
Phillip T BurchDivision of Cardiothoracic Surgery, Primary Children's Hospital/University of Utah, Salt Lake City, Utah.
Eric M GrahamDivision of Pediatric Cardiology, Medical University of South Carolina, Charleston, South Carolina.
Jonathan R KaltmanDivision of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, Bethesda, Maryland.
Kirk R KanterDivision of Cardiothoracic Surgery, Emory University School of Medicine, Atlanta, Georgia.
Carlos M MeryDivision of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Texas Children's Hospital/Baylor College of Medicine, Houston, Texas.
Christian PizarroDivision of Pediatric Cardiothoracic Surgery, Nemours Cardiac Center and the Alfred I duPont Hospital for Children, Wilmington, Delaware.
Marcus S SchambergerDivision of Pediatric Cardiology, Riley Hospital for Children, Indiana University, Indianapolis, Indiana.
Michael D TaylorDivision of Cardiology, Cincinatti Children's Hospital Medical Center, Cincinnati, Ohio.
Jeffrey P JacobsDivision of Cardiovascular Surgery, Department of Surgery, Johns Hopkins All Children's Heart Institute, All Children's Hospital and Florida Hospital for Children, St. Petersburg, Tampa, and Orlando, Florida.
Sara K PasqualiDepartment of Pediatrics and Communicable Diseases, University of Michigan Medical School, CS Mott Children's Hospital, Ann Arbor, Michigan.
Pediatric Heart Network Investigators

Funding

Pediatric Heart network DCCU10HL068270 · NHLBI · NEW ENGLAND RESEARCH INSTITUTES, INC. · PI MILLER, JULIE ELAINE, TRACHTENBERG, FELICIA LYNN · 2011 to 2016
$44.9M
Ventricular Volumes and Varability (VVV)U01HL068270 · NHLBI · NEW ENGLAND RESEARCH INSTITUTES, INC. · PI SLEEPER, LYNN A · 2001 to 2010
$40.3M
MIS-C Program: Data Coordinating Center for the Pediatric Heart Network MIS-C ProgramU24HL135691 · NHLBI · NEW ENGLAND RESEARCH INSTITUTES, INC. · PI MILLER, JULIE ELAINE, TRACHTENBERG, FELICIA LYNN · 2017 to 2024
$37.9M
Mouse Neurodevelopmental Behavior CoreU54HD090255 · NICHD · BOSTON CHILDREN'S HOSPITAL · PI POMEROY, SCOTT LOREN · 2016 to 2020
$5.2M
Clinical and Translational Science AwardKL2TR000081 · NCATS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI GINSBERG, HENRY N · 2012 to 2015
$3.3M
Sidenafil Impacts Exercise Performance in Adolescent Survivors of the FontanU10HL109818 · NHLBI · CHILDREN'S HOSP OF PHILADELPHIA · PI GAYNOR, JAMES WILLIAM, PARIDON, STEPHEN · 2011 to 2015
$2.7M
Randomized Trial of Nonflouroscopic Technologies in Pediatric SVT AblationU10HL109816 · NHLBI · BOSTON CHILDREN'S HOSPITAL · PI NEWBURGER, JANE W., TRIEDMAN, JOHN K · 2011 to 2015
$2.6M
Pediatric Heart Network Prairieland ConsortiumU10HL109673 · NHLBI · CINCINNATI CHILDRENS HOSP MED CTR · PI CNOTA, JAMES, PAYNE, RONALD MARK · 2011 to 2015
$2.3M
Pediatric Heart Network Regents of the University of MichiganU10HL109737 · NHLBI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI GOLDBERG, CAREN S, OHYE, RICHARD G · 2011 to 2015
$2.3M
Pediatric Heart Network University of UtahU10HL109743 · NHLBI · UNIVERSITY OF UTAH · PI MINICH, L. LUANN, WILLIAMS, RICHARD VINCENT · 2011 to 2015
$2.2M
Pediatric Heart Network Emory UniversityUG1HL135682 · NHLBI · EMORY UNIVERSITY · PI BOOK, WENDY M., KOCHILAS, LAZAROS K. · 2017 to 2023
$2.2M
Pediatric Heart Network Medical University of South CarolinaU10HL109778 · NHLBI · MEDICAL UNIVERSITY OF SOUTH CAROLINA · PI ATZ, ANDREW M, GRAHAM, ERIC M. · 2011 to 2015
$2.2M
NCATS NIH HHS KL2 TR000081NHLBI NIH HHS K23 HL119600NHLBI NIH HHS U01 HL068270NHLBI NIH HHS U10 HL068270NHLBI NIH HHS U10 HL109673NHLBI NIH HHS U10 HL109737NHLBI NIH HHS U10 HL109741NHLBI NIH HHS U10 HL109743NHLBI NIH HHS U10 HL109778NHLBI NIH HHS U10 HL109781NHLBI NIH HHS U10 HL109816NHLBI NIH HHS U10 HL109818NHLBI NIH HHS U24 HL135691NHLBI NIH HHS UG1 HL135682NICHD NIH HHS U54 HD090255
6 · The paper itself

Abstract

backgroundData routinely captured in clinical registries may be leveraged to enhance efficiency of prospective research. The quality of registry data for this purpose has not been studied, however. We evaluated the completeness and accuracy of perioperative data within congenital heart centers' local surgical registries.

methodsWithin 12 Pediatric Heart Network (PHN) sites, we evaluated 31 perioperative variables (and their subcategories, totaling 113 unique fields) collected via sites' local clinical registries for submission to The Society of Thoracic Surgeons Database, compared with chart review by PHN research coordinators. Both used standard STS definitions. Data were collected on 10 subjects for 2 to 5 procedures/site and adjudicated by the study team. Completeness and accuracy (agreement of registry data with medical record review by PHN coordinator, adjudicated by the study team) were evaluated.

resultsA total of 56,500 data elements were collected on 500 subjects. With regard to data completeness, 3.1% of data elements were missing from the registry, 0.6% from coordinator-collected data, and 0.4% from both. Overall, registry data accuracy was 98%. In total, 94.7% of data elements were both complete/non-missing and accurate within the registry, although there was variation across data fields and sites. Mean total time for coordinator chart review per site was 49.1 hours versus 7.0 hours for registry query.

conclusionsThis study suggests that existing surgical registry data constitute a complete, accurate, and efficient information source for prospective research. Variability across data fields and sites also suggest areas for improvement in some areas of data quality.

Indexed as

Outcome Assessment, Health CareRegistriesSocieties, MedicalChildChild, PreschoolDatabases, FactualFemaleHeart Defects, CongenitalHumansInfantInfant, NewbornMaleProspective StudiesReproducibility of ResultsThoracic SurgeryUnited States

Identifiers

PMID27726857
PMCPMC5253303

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