Exploring the similarities and differences of variables collected by burn registers globally: protocol for a data dictionary review study

Introduction
Burn registers can provide high quality clinical data that can be used for surveillance, research, planning service provision, and clinical quality assessment. Many country-wide and inter-country burn registers now exist. The variables
collected by burn registers are not standardised internationally. Few international burn register data comparisons are completed beyond basic morbidity and mortality statistics. Data comparisons across registers require analysis of
homogenous variables. Little work has been done to understand if burn registers have sufficiently similar variables to enable useful comparisons. The aim of this project is to compare the variables collected in country-wide and intercountry burn registers internationally to understand their similarities and differences.
Methods and analysis
Register custodians will be invited to participate in the study and to share their register data dictionaries. Study objectives are to compare patient inclusion and exclusion criteria of each participating burn register; determine which variables are collected by each register and if variables are required or optional, identify common variable themes; and compare a sample of data variables to understand how they are defined and measured. All variable names will be extracted from each register and common themes identified. Detailed information will be extracted for a sample of variables to give a deeper insight into similarities and differences between registers.
Ethics and dissemination
No patient data will be used in this project. Permission to use each register’s data dictionary will be sought from respective register custodians. Results will be presented at international meetings and published in open access journals. These results will be of interest to register custodians and researchers wishing to explore international data comparisons, and countries wishing to establish their own burn register.
STRENGTHS AND LIMITATIONS OF THIS STUDY
• Training and pilot exercises will be undertaken to ensure register design data extraction is completed to a
high standard.
• Extracted information will be verified by a second researcher.
• A custodian from each register will be invited to be part of the study team to ensure accurate interpretation
of the data dictionaries, subsequent analyses, and write up.
• Registers will be identified from the peer reviewed literature, which may miss those that have not published
their findings.
• The majority of burn registers exist in high income countries, so this study may underrepresent variables
important for burn prevention and care in lower resourced environments.