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Author Notes:

Address correspondence to Dr Meena Nathan, Department of Cardiac Surgery, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115; email: meena.nathan@cardio.chboston.org.

The authors thank the registry data managers and PHN coordinators from the 12 sites for having been an integral part of the project.

Without their support this project would not have been possible.

Mr. White discloses a financial relationship with CardioAccess.

The views expressed in this paper represent those of the authors and not necessarily those of NHLBI or the National Institutes of Health.

Subject:

Research Funding:

This work was supported by the National Heart, Lung, and Blood Institute (NHLBI). (HL068270, HL109816, HL109818, HL109778, HL109743, HL109737, HL109673, HL109781, HL109741, HL068270).

Dr. Nathan is supported by a K23 grant (HL119600) from the NHLBI.

Mr. Stopp is supported by funds from the Kostin Family Innovation Fund and Farb Family Fund.

Dr. Anderson is supported by a KL2 grant (TR000081) from the NCATS.

Dr. Pasquali receives support from the Janette Ferrantino Professorship.

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Cardiac & Cardiovascular Systems
  • Respiratory System
  • Surgery
  • Cardiovascular System & Cardiology
  • CARDIAC-DISEASE
  • OPPORTUNITIES
  • NOMENCLATURE
  • CONDUCT
  • TRIALS
  • PRIMER

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

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Journal Title:

Annals of Thoracic Surgery

Volume:

Volume 103, Number 2

Publisher:

, Pages 629-636

Type of Work:

Article | Post-print: After Peer Review

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.

Copyright information:

© 2017 The Society of Thoracic Surgeons

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