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Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery
Meena Nathan1, Marshall L Jacobs2, J William Gaynor3
1Department of Cardiac Surgery, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
Insights
Clinical registries offer a complete and accurate data source for research. This study found registry data to be highly reliable, improving research efficiency.
Area of Science:
- Cardiovascular Surgery
- Clinical Informatics
- Data Science
Background:
- Clinical registries routinely collect data that can support prospective research.
- The quality of registry data for research purposes requires thorough evaluation.
- Perioperative data completeness and accuracy in congenital heart centers' surgical registries were assessed.
Purpose of the Study:
- To evaluate the completeness and accuracy of perioperative data in local surgical registries at congenital heart centers.
- To determine the suitability of existing registry data for enhancing prospective research efficiency.
Main Methods:
- Evaluated 31 perioperative variables across 113 fields from 12 Pediatric Heart Network (PHN) sites.
- Compared local clinical registry data with chart reviews by PHN research coordinators using standard STS definitions.
- Assessed data completeness and accuracy, with adjudication by a study team.
Main Results:
- A total of 56,500 data elements were collected from 500 subjects.
- Registry data completeness was high, with only 3.1% missing elements; accuracy was 98%.
- Overall, 94.7% of registry data elements were both complete and accurate, with significant time savings compared to manual chart review.
Conclusions:
- Existing surgical registry data are a complete, accurate, and efficient resource for prospective research.
- Variability in data fields and sites indicates opportunities for targeted data quality improvements.
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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