Health-related registries arose because of clinicians’ desires 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. Because of 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. By restricting our review to records with an admission year of 2000 or later, we found that 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 5500 records. Depending on the criterion used to identify duplicate records, we found at least 4000 duplicate records but as many as 14,000 in the database. Finally, significant data quality issues were found for facilities not using the Trauma Registry for the American College of Surgeons (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 before conducting analyses using the NBR.
From the *Division of Biostatistics, Department of Public Health Sciences, University of California Davis School of Medicine, Sacramento; †Data Coordinating Center, Department of Surgery, University of California Davis Medical Center, Sacramento; ‡Department of Surgery, University of California, Davis; and §Shriners Hospital for Children Northern California, Sacramento. Supported by the National Center for Research Resources, National Institutes of Health, grant #UL1 RR024146, the National Center for Advancing Translational Sciences, National Institutes of Health, grant #TR 000002, and by USAMRMC Award #W81XWH-09-1-069.
The authors declare no conflict of interest.
Address correspondence to Tina L. Palmieri, MD, FACS, FCCM, University of California Davis and Shriners Hospital for Children Northern California, 2425 Stockton Blvd, Suite 718 Sacramento, CA 95618.