title: Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery.
abstract: BACKGROUND
  Data 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.
  
  
  METHODS
  Within 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.
  
  
  RESULTS
  A 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.
  
  
  CONCLUSIONS
  This 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.
authors.affiliation: Department of Cardiac Surgery, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts. Electronic address: meena.nathan@cardio.chboston.org.
authors.forename: Meena
authors.initials: M
authors.lastname: Nathan
authors.affiliation: Division of Cardiac Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland.
authors.forename: Marshall L
authors.initials: ML
authors.lastname: Jacobs
authors.affiliation: Division of Cardiothoracic Surgery, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
authors.forename: J William
authors.initials: JW
authors.lastname: Gaynor
authors.affiliation: Department of Cardiology, Boston Children's Hospital, Department of Surgery and Pediatrics, Harvard Medical School, Boston, Massachusetts.
authors.forename: Jane W
authors.initials: JW
authors.lastname: Newburger
authors.affiliation: Department of Cardiology, Boston Children's Hospital, Department of Surgery and Pediatrics, Harvard Medical School, Boston, Massachusetts.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Dunbar Masterson
authors.affiliation: Division of Cardiothoracic Surgery, Primary Children's Hospital/University of Utah, Salt Lake City, Utah.
authors.forename: Linda M
authors.initials: LM
authors.lastname: Lambert
authors.affiliation: New England Research Institutes, Watertown, Massachusetts.
authors.forename: Danielle
authors.initials: D
authors.lastname: Hollenbeck-Pringle
authors.affiliation: New England Research Institutes, Watertown, Massachusetts.
authors.forename: Felicia L
authors.initials: FL
authors.lastname: Trachtenberg
authors.affiliation: CardioAccess Inc, Fort Lauderdale, Florida.
authors.forename: Owen
authors.initials: O
authors.lastname: White
authors.affiliation: Department of Pediatrics, Division of Pediatric Cardiology, Morgan Stanley Hospital, Columbia Presbyterian University, New York, New York.
authors.forename: Brett R
authors.initials: BR
authors.lastname: Anderson
authors.affiliation: New England Research Institutes, Watertown, Massachusetts.
authors.forename: Margaret C
authors.initials: MC
authors.lastname: Bell
authors.affiliation: Division of Cardiothoracic Surgery, Primary Children's Hospital/University of Utah, Salt Lake City, Utah.
authors.forename: Phillip T
authors.initials: PT
authors.lastname: Burch
authors.affiliation: Division of Pediatric Cardiology, Medical University of South Carolina, Charleston, South Carolina.
authors.forename: Eric M
authors.initials: EM
authors.lastname: Graham
authors.affiliation: Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, Bethesda, Maryland.
authors.forename: Jonathan R
authors.initials: JR
authors.lastname: Kaltman
authors.affiliation: Division of Cardiothoracic Surgery, Emory University School of Medicine, Atlanta, Georgia.
authors.forename: Kirk R
authors.initials: KR
authors.lastname: Kanter
authors.affiliation: Division of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Texas Children's Hospital/Baylor College of Medicine, Houston, Texas.
authors.forename: Carlos M
authors.initials: CM
authors.lastname: Mery
authors.affiliation: Division of Pediatric Cardiothoracic Surgery, Nemours Cardiac Center and the Alfred I duPont Hospital for Children, Wilmington, Delaware.
authors.forename: Christian
authors.initials: C
authors.lastname: Pizarro
authors.affiliation: Division of Pediatric Cardiology, Riley Hospital for Children, Indiana University, Indianapolis, Indiana.
authors.forename: Marcus S
authors.initials: MS
authors.lastname: Schamberger
authors.affiliation: Division of Cardiology, Cincinatti Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Taylor
authors.affiliation: Division 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.
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Jacobs
authors.affiliation: Department of Pediatrics and Communicable Diseases, University of Michigan Medical School, CS Mott Children's Hospital, Ann Arbor, Michigan.
authors.forename: Sara K
authors.initials: SK
authors.lastname: Pasquali
mesh_terms: D002648:Child; D002675:Child, Preschool; D016208:Databases, Factual; D005260:Female; D006330:Heart Defects, Congenital / Q000601:surgery*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D017063:Outcome Assessment, Health Care; D011446:Prospective Studies; D012042:Registries; D015203:Reproducibility of Results; D012955:Societies, Medical; D013903:Thoracic Surgery / Q000706:statistics & numerical data*; D014481:United States