Health-related registries arose due from clinician desire to improve patient quality of care for a specific disorder. As such, disease registries differ from administrative registries in concept, organization, purpose, data recording, and results. Due to their voluntary nature, health-related disease registries are not regularly audited, have a narrow focus, and are designed for clinicians, not administrators. As part of a Department of Defense initiative we conducted an intensive qualitative review of the American Burn Association’s National Burn Repository (NBR). Our objectives are to inform future users of the NBR of issues that could affect statistical analyses and inferences and assist efforts to improve data collection.
We obtained a deidentified copy of the 2009 release of the NBR containing 286,293 records. We reviewed this data set for 1) records lacking vital patient information (age, burn size, survival, gender), 2) inconsistencies between data in different fields of the database, and 3) duplicate values.
Restricting our review to records with an admission year of 2000 or later, vital patient information was missing or invalid for about 60,000 records. Data inconsistencies were found in hospital admission status (initial admission or readmission) for about 12,000 records, survival for about 950 records, and burn injury for about 5,500 records. Depending on the criteria used to identify duplicate records, we found at least 4,000 duplicate records but as many as 14,000 in the database. Finally, significant data quality issues were found for facilities not using the TRACS software.
All health-related disease registries, unlike administrative databases, are voluntary. Anonymity of data is vital, and data auditing and reporting are challenging. The data contained in the NBR is disease-specific, and, as such, has the potential to provide valuable epidemiologic, treatment, and outcome data as reported by clinicians, not registrars. The NBR provides substantive data on burn injury; however, data review needs to precede data analysis. Revisions to NBR data collection have improved the quality of data submitted, yet data quality issues remain in the current database. Investigators are cautioned to thoroughly assess all fields prior to conducting analyses using the NBR.