Burn Registries State of Affairs: A Scoping review

Abstract

Registry science allows for the interpretation of disease-specific patient data from secondary databases. It can be utilized to understand disease and injury, answer research questions, and engender benchmarking of quality-of-care indicators. Numerous burn registries exist globally, however, their contributions to burn care have not been summarized. The objective of this study is to characterize the available literature on burn registries. The authors conducted a scoping review, having registered the protocol a priori. A thorough search of the English literature, including grey literature, was carried out. Publications of all study designs were eligible for inclusion provided they utilized, analyzed, and/or critiqued data from a burn registry. Three hundred twenty studies were included, encompassing 16 existing burn registries. The most frequently used registries for peer-reviewed publications were the American Burn Association Burn Registry, Burn Model System National Database, and the Burns Registry of Australia and New Zealand. The main limitations of existing registries are the inclusion of patients admitted to burn centers only, deficient capture of outpatient and long-term outcome data, lack of data standardization across registries, and the paucity of studies on burn prevention and quality improvement methodology. Registries are an invaluable source of information for research, delivery of care planning, and benchmarking of processes and outcomes. Efforts should be made to stimulate other jurisdictions to build burn registries and for existing registries to be improved through data linkage with administrative databases, and by standardizing one international minimum dataset, in order to maximize the potential of registry science in burn care.