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

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          Abstract

          Introduction

          Burn registers can provide high-quality clinical data that can be used for surveillance, research, planning service provision and clinical quality assessment. Many countrywide and intercountry 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 whether burn registers have sufficiently similar variables to enable useful comparisons. The aim of this project is to compare the variables collected in countrywide and intercountry burn registers internationally to understand their similarities and differences.

          Methods and analysis

          Burn 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 variables to understand how they are defined and measured. All variable names will be extracted from each register and common themes will be 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.

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          Most cited references26

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          Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019

          Summary Background In an era of shifting global agendas and expanded emphasis on non-communicable diseases and injuries along with communicable diseases, sound evidence on trends by cause at the national level is essential. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) provides a systematic scientific assessment of published, publicly available, and contributed data on incidence, prevalence, and mortality for a mutually exclusive and collectively exhaustive list of diseases and injuries. Methods GBD estimates incidence, prevalence, mortality, years of life lost (YLLs), years lived with disability (YLDs), and disability-adjusted life-years (DALYs) due to 369 diseases and injuries, for two sexes, and for 204 countries and territories. Input data were extracted from censuses, household surveys, civil registration and vital statistics, disease registries, health service use, air pollution monitors, satellite imaging, disease notifications, and other sources. Cause-specific death rates and cause fractions were calculated using the Cause of Death Ensemble model and spatiotemporal Gaussian process regression. Cause-specific deaths were adjusted to match the total all-cause deaths calculated as part of the GBD population, fertility, and mortality estimates. Deaths were multiplied by standard life expectancy at each age to calculate YLLs. A Bayesian meta-regression modelling tool, DisMod-MR 2.1, was used to ensure consistency between incidence, prevalence, remission, excess mortality, and cause-specific mortality for most causes. Prevalence estimates were multiplied by disability weights for mutually exclusive sequelae of diseases and injuries to calculate YLDs. We considered results in the context of the Socio-demographic Index (SDI), a composite indicator of income per capita, years of schooling, and fertility rate in females younger than 25 years. Uncertainty intervals (UIs) were generated for every metric using the 25th and 975th ordered 1000 draw values of the posterior distribution. Findings Global health has steadily improved over the past 30 years as measured by age-standardised DALY rates. After taking into account population growth and ageing, the absolute number of DALYs has remained stable. Since 2010, the pace of decline in global age-standardised DALY rates has accelerated in age groups younger than 50 years compared with the 1990–2010 time period, with the greatest annualised rate of decline occurring in the 0–9-year age group. Six infectious diseases were among the top ten causes of DALYs in children younger than 10 years in 2019: lower respiratory infections (ranked second), diarrhoeal diseases (third), malaria (fifth), meningitis (sixth), whooping cough (ninth), and sexually transmitted infections (which, in this age group, is fully accounted for by congenital syphilis; ranked tenth). In adolescents aged 10–24 years, three injury causes were among the top causes of DALYs: road injuries (ranked first), self-harm (third), and interpersonal violence (fifth). Five of the causes that were in the top ten for ages 10–24 years were also in the top ten in the 25–49-year age group: road injuries (ranked first), HIV/AIDS (second), low back pain (fourth), headache disorders (fifth), and depressive disorders (sixth). In 2019, ischaemic heart disease and stroke were the top-ranked causes of DALYs in both the 50–74-year and 75-years-and-older age groups. Since 1990, there has been a marked shift towards a greater proportion of burden due to YLDs from non-communicable diseases and injuries. In 2019, there were 11 countries where non-communicable disease and injury YLDs constituted more than half of all disease burden. Decreases in age-standardised DALY rates have accelerated over the past decade in countries at the lower end of the SDI range, while improvements have started to stagnate or even reverse in countries with higher SDI. Interpretation As disability becomes an increasingly large component of disease burden and a larger component of health expenditure, greater research and development investment is needed to identify new, more effective intervention strategies. With a rapidly ageing global population, the demands on health services to deal with disabling outcomes, which increase with age, will require policy makers to anticipate these changes. The mix of universal and more geographically specific influences on health reinforces the need for regular reporting on population health in detail and by underlying cause to help decision makers to identify success stories of disease control to emulate, as well as opportunities to improve. Funding Bill & Melinda Gates Foundation.
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            Observational Health Data Sciences and Informatics (OHDSI): Opportunities for Observational Researchers.

            The vision of creating accessible, reliable clinical evidence by accessing the clincial experience of hundreds of millions of patients across the globe is a reality. Observational Health Data Sciences and Informatics (OHDSI) has built on learnings from the Observational Medical Outcomes Partnership to turn methods research and insights into a suite of applications and exploration tools that move the field closer to the ultimate goal of generating evidence about all aspects of healthcare to serve the needs of patients, clinicians and all other decision-makers around the world.
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              Outcome reporting bias in randomized trials funded by the Canadian Institutes of Health Research.

              The reporting of outcomes within published randomized trials has previously been shown to be incomplete, biased and inconsistent with study protocols. We sought to determine whether outcome reporting bias would be present in a cohort of government-funded trials subjected to rigorous peer review. We compared protocols for randomized trials approved for funding by the Canadian Institutes of Health Research (formerly the Medical Research Council of Canada) from 1990 to 1998 with subsequent reports of the trials identified in journal publications. Characteristics of reported and unreported outcomes were recorded from the protocols and publications. Incompletely reported outcomes were defined as those with insufficient data provided in publications for inclusion in meta-analyses. An overall odds ratio measuring the association between completeness of reporting and statistical significance was calculated stratified by trial. Finally, primary outcomes specified in trial protocols were compared with those reported in publications. We identified 48 trials with 68 publications and 1402 outcomes. The median number of participants per trial was 299, and 44% of the trials were published in general medical journals. A median of 31% (10th-90th percentile range 5%-67%) of outcomes measured to assess the efficacy of an intervention (efficacy outcomes) and 59% (0%-100%) of those measured to assess the harm of an intervention (harm outcomes) per trial were incompletely reported. Statistically significant efficacy outcomes had a higher odds than nonsignificant efficacy outcomes of being fully reported (odds ratio 2.7; 95% confidence interval 1.5-5.0). Primary outcomes differed between protocols and publications for 40% of the trials. Selective reporting of outcomes frequently occurs in publications of high-quality government-funded trials.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2023
                28 February 2023
                : 13
                : 2
                : e066512
                Affiliations
                [1 ]departmentCentre for Mental Health and Society , Bangor University , Bangor, UK
                [2 ]departmentEmergency Department , Ysbyty Gwynedd , Bangor, UK
                [3 ]departmentPlastic and Reconstructive Surgery Department , Norfolk and Norwich University Hospitals NHS Foundation Trust , Norwich, UK
                [4 ]departmentArizona Burn Center , Valleywise Health Medical Center , Phoenix, Arizona, USA
                [5 ]departmentDepartment of Surgery , Creighton University Health Sciences Campus , Phoenix, Arizona, USA
                [6 ]departmentVictoria Adult Burn Service , The Alfred Hospital , Melbourne, Victoria, Australia
                [7 ]departmentBurn Care Informatics Group , NHS England , Manchester, UK
                [8 ]departmentChildren's Burn Research Centre , University Hospitals Bristol and Weston NHS Foundation Trust , Bristol, UK
                [9 ]departmentBristol Centre for Surgical Research, Population Health Sciences, Bristol Medical School , University of Bristol , Bristol, UK
                Author notes
                [Correspondence to ] Dr Emily Bebbington; e.bebbington@ 123456bangor.ac.uk
                Author information
                http://orcid.org/0000-0003-1332-7558
                http://orcid.org/0000-0001-7205-492X
                Article
                bmjopen-2022-066512
                10.1136/bmjopen-2022-066512
                9980371
                36854585
                388ac9d7-34f8-415d-b7fc-bacea5c729b3
                © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:  https://creativecommons.org/licenses/by/4.0/.

                History
                : 12 July 2022
                : 15 February 2023
                Funding
                Funded by: National Institute for Health Research (NIHR);
                Award ID: Dr Amber Young Advanced Fellowship (NIHR 301362)
                Categories
                Surgery
                1506
                1737
                Protocol
                Custom metadata
                unlocked

                Medicine
                plastic & reconstructive surgery,public health,epidemiology,international health services,quality in health care

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