1. Exploring the similarities and differences of burn registers globally: Results from a data dictionary comparison study.
- Author
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Bebbington E, Miles J, Young A, van Baar ME, Bernal N, Brekke RL, van Dammen L, Elmasry M, Inoue Y, McMullen KA, Paton L, Thamm OC, Tracy LM, Zia N, Singer Y, and Dunn K
- Subjects
- Humans, Hospitalization statistics & numerical data, Smoke Inhalation Injury epidemiology, Global Health statistics & numerical data, Age Factors, Male, Adult, Burns epidemiology, Registries
- Abstract
Introduction: Pooling and comparing data from the existing global network of burn registers represents a powerful, yet untapped, opportunity to improve burn prevention and care. There have been no studies investigating whether registers are sufficiently similar to allow data comparisons. It is also not known what differences exist that could bias analyses. Understanding this information is essential prior to any future data sharing. The aim of this project was to compare the variables collected in countrywide and intercountry burn registers to understand their similarities and differences., Methods: Register custodians were invited to participate and share their data dictionaries. Inclusion and exclusion criteria were compared to understand each register population. Descriptive statistics were calculated for the number of unique variables. Variables were classified into themes. Definition, method, timing of measurement, and response options were compared for a sample of register concepts., Results: 13 burn registries participated in the study. Inclusion criteria varied between registers. Median number of variables per register was 94 (range 28 - 890), of which 24% (range 4.8 - 100%) were required to be collected. Six themes (patient information, admission details, injury, inpatient, outpatient, other) and 41 subthemes were identified. Register concepts of age and timing of injury show similarities in data collection. Intent, mechanism, inhalational injury, infection, and patient death show greater variation in measurement., Conclusions: We found some commonalities between registers and some differences. Commonalities would assist in any future efforts to pool and compare data between registers. Differences between registers could introduce selection and measurement bias, which needs to be addressed in any strategy aiming to facilitate burn register data sharing. We recommend the development of common data elements used in an international minimum data set for burn injuries, including standard definitions and methods of measurement, as the next step in achieving burn register data sharing., Competing Interests: Declaration of Competing Interest All authors, with the exception of AY, have completed an International Committee of Medical Journal Editors disclosure of interest form at www.icmje.org/disclosure-of-interest/. EB, JM, MB, RLB, LD, ME, YI, LP, NZ, and YS do not have any interests to declare. NB declares financial payments from Central Ohio Trauma Services as an ATLS instructor, Mallinckrodt Pharmaceuticals as a speaker, Vericel Corporation as an instructor, and Carpenter Lipps and Leland for expert testimony. NB receives a stipend from The Ohio State University for travel and meetings. NB is a board member of the Trauma Intervention Program and Epic Trauma steering board, both of which are unpaid positions. KM declares that the contents of this manuscript relating to the Burn Model System were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DPGE0004). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government. OCT is the lead of the German Burn Registry and member of the steering committee of the German Society for Burn Treatment. LMT is a Representative on the Burns Registry of Australia and New Zealand steering committee, and representative on the Australian and New Zealand Burn Association board. KD is the medical director of the International Burn Injury Database. As part of this role, he is the co-chair of the Burn Care Informatics Group. This is a part time role funded by the NHS., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)
- Published
- 2024
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