Cohort profile for the creation of the SAIL MELD-B e-cohort (SMC) and SAIL MELD-B children and Young adult e-cohort (SMYC)

medrxiv(2024)

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Purpose: We have established the SAIL MELD-B electronic cohort (e-cohort SMC) and the SAIL MELD-B children and Young adults e-cohort (SMYC) as a part of the Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) project. Each cohort has been created to investigate and develop a deeper understanding of the lived experience of the burdensomeness of multimorbidity by identifying new clusters of burdensomeness indicators, exploring early life risk factors of multimorbidity and modelling hypothetical prevention scenarios. Participants: The SMC and SMYC are longitudinal e-cohorts created from routinely-collected individual-level population-scale anonymised data sources available within the Secure Anonymised Information Linkage (SAIL) Databank. They include individuals with available records from linked health and demographic data sources in SAIL at any time between 1st January 2000 and 31st December 2022. The SMYC e-cohort is a subset of the SMC, including only individuals born on or after the cohort start date. Findings to date: The SMC and SMYC cohorts include 5,180,602 (50.3% female and 49.7% male) and 896,155 (48.7% female and 51.3% male) individuals respectively. Considering both primary and secondary care health data, the five most common long-term conditions for individuals in SMC are Depression, affecting 21.6% of the cohort, Anxiety (21.1%), Asthma (17.5%), Hypertension (16.2%) and Atopic Eczema (14.1%), and the five most common conditions for individuals in SMYC are Atopic Eczema (21.2%), Asthma (11.6%), Anxiety (6.0%), Deafness (4.6%) and Depression (4.3%). Future plans: The SMC and SMYC e-cohorts have been developed using a reproducible, maintainable concept curation pipeline, which allows for the cohorts to be updated dynamically over time and manages for the request and processing of further approved long-term conditions and burdensomeness indicators extraction. Best practices from the MELD-B project can be utilised across other projects, accessing similar data with population-scale data sources and trusted research environments. ### Competing Interest Statement The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Rhiannon K Owen is a member of the National Institute for Health and Care Excellence (NICE) Technology Appraisal Committee, member of the NICE Decision Support Unit (DSU), and associate member of the NICE Technical Support Unit (TSU). She has served as a paid consultant providing unrelated methodological advice to AstraZeneca, Cogentia Healthcare Ltd, Daiichi Sankyo, NICE, the Norwegian Institute of Public Health, Roche, and Vifor Pharma. She reports teaching fees from the Association of British Pharmaceutical Industry (ABPI) and the University of Bristol. Rebecca B Hoyle is a member of the Scientific Board of the Smith Institute for Industrial Mathematics and System Engineering. All other Authors declare that there are no further conflicts of interest. ### Funding Statement The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute for Health Research (NIHR) under its Programme Artificial Intelligence for Multiple and Long-Term Conditions (NIHR203988). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The SAIL Databank independent Information Governance Review Panel has approved this study (SAIL Project: 1377). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes The data used in this study are available in the SAIL Databank at Swansea University, Swansea, UK. All proposals to use SAIL data are subject to review by an independent Information Governance Review Panel (IGRP). Before any data can be accessed, approval must be given by the IGRP. The IGRP carefully considers each project to ensure the proper and appropriate use of SAIL data. When approved, access is gained through a privacy-protecting trusted research environment (TRE) and remote access system referred to as the SAIL Gateway. SAIL has established an application process to be followed by anyone who would like to access data via SAIL https://www.saildatabank.com/application-process .
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