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, Margaret C. Bell, Phillip T. Burch, Eric M. Graham, Jonathan R. Kaltman, Kirk R. Kanter, Carlos M. Mery, Christian Pizarro, Marcus S. Schamberger, Michael D. Taylor, Jeffrey P. JacobsSara K. Pasquali

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalAnnals of Thoracic Surgery
DOIs
StateAccepted/In press - 2016

Fingerprint

Thoracic Surgery
Registries
Pediatrics
Research
Medical Records
Databases
Data Accuracy

ASJC Scopus subject areas

  • Surgery
  • Pulmonary and Respiratory Medicine
  • Cardiology and Cardiovascular Medicine

Cite this

Nathan, M., Jacobs, M. L., Gaynor, J. W., Newburger, J. W., Dunbar Masterson, C., Lambert, L. M., ... Pasquali, S. K. (Accepted/In press). Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery. Annals of Thoracic Surgery. https://doi.org/10.1016/j.athoracsur.2016.06.111

Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery. / Nathan, Meena; Jacobs, Marshall L; Gaynor, J. William; Newburger, Jane W.; Dunbar Masterson, Carolyn; Lambert, Linda M.; Hollenbeck-Pringle, Danielle; Trachtenberg, Felicia L.; White, Owen; Anderson, Brett R.; Bell, Margaret C.; Burch, Phillip T.; Graham, Eric M.; Kaltman, Jonathan R.; Kanter, Kirk R.; Mery, Carlos M.; Pizarro, Christian; Schamberger, Marcus S.; Taylor, Michael D.; Jacobs, Jeffrey P.; Pasquali, Sara K.

In: Annals of Thoracic Surgery, 2016.

Research output: Contribution to journalArticle

Nathan, M, Jacobs, ML, Gaynor, JW, Newburger, JW, Dunbar Masterson, C, Lambert, LM, Hollenbeck-Pringle, D, Trachtenberg, FL, White, O, Anderson, BR, Bell, MC, Burch, PT, Graham, EM, Kaltman, JR, Kanter, KR, Mery, CM, Pizarro, C, Schamberger, MS, Taylor, MD, Jacobs, JP & Pasquali, SK 2016, 'Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery', Annals of Thoracic Surgery. https://doi.org/10.1016/j.athoracsur.2016.06.111
Nathan, Meena ; Jacobs, Marshall L ; Gaynor, J. William ; Newburger, Jane W. ; Dunbar Masterson, Carolyn ; Lambert, Linda M. ; Hollenbeck-Pringle, Danielle ; Trachtenberg, Felicia L. ; White, Owen ; Anderson, Brett R. ; Bell, Margaret C. ; Burch, Phillip T. ; Graham, Eric M. ; Kaltman, Jonathan R. ; Kanter, Kirk R. ; Mery, Carlos M. ; Pizarro, Christian ; Schamberger, Marcus S. ; Taylor, Michael D. ; Jacobs, Jeffrey P. ; Pasquali, Sara K. / Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery. In: Annals of Thoracic Surgery. 2016.
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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.",
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T1 - Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery

AU - Nathan, Meena

AU - Jacobs, Marshall L

AU - Gaynor, J. William

AU - Newburger, Jane W.

AU - Dunbar Masterson, Carolyn

AU - Lambert, Linda M.

AU - Hollenbeck-Pringle, Danielle

AU - Trachtenberg, Felicia L.

AU - White, Owen

AU - Anderson, Brett R.

AU - Bell, Margaret C.

AU - Burch, Phillip T.

AU - Graham, Eric M.

AU - Kaltman, Jonathan R.

AU - Kanter, Kirk R.

AU - Mery, Carlos M.

AU - Pizarro, Christian

AU - Schamberger, Marcus S.

AU - Taylor, Michael D.

AU - Jacobs, Jeffrey P.

AU - Pasquali, Sara K.

PY - 2016

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N2 - 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.

AB - 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.

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