Abstract

Background: New data collection in established longitudinal population studies provides an opportunity for studying the risk factors and sequelae of the novel coronavirus disease 2019 (COVID-19), plus the indirect impacts of the COVID-19 pandemic on wellbeing. The Extended Cohort for E-health, Environment and DNA (EXCEED) cohort is a population-based cohort (N>11,000), recruited from 2013 in Leicester, Leicestershire and Rutland. EXCEED includes consent for electronic healthcare record (EHR) linkage, spirometry, genomic data, and questionnaire data. Methods: Between May 2020 and July 2021, a new questionnaire was deployed in EXCEED, which captured COVID-19 symptoms, general physical and mental health, plus socioeconomic and environmental factors during the pandemic. An online system was developed to invite new participants to join EXCEED, with informed consent being provided online. New and existing participants then completed the COVID-19 questionnaire online. A subset of the new questionnaire respondents were invited to participate in COVID-19 serology substudies, using home antibody testing kits. Results: In total, 3,693 participants provided COVID-19 infection status (median age 62.9 (IQR 54.7-69.2), 58.9% female). Trends of monthly incidence proportions of COVID-19 in EXCEED (self-report or symptom-predicted) approximated local and national figures. Regression analysis of 2,768 participants with linked EHR data showed no obvious monotonic relationship between number of chronic diseases (of 16 pre-specified diseases) and COVID-19 infection. There were 2,144 participants with valid results from a kit allowing differentiation between antibodies due to vaccination or infection. Of these, 8.5% had results consistent with previous COVID-19 infection, and 85.9% had evidence of COVID-19 vaccination, but without evidence of infection. Conclusions: Enriching EXCEED with a new COVID-19 questionnaire and serology data may improve understanding of the risk factors, clinical sequelae and broader impacts of the COVID-19 pandemic in the general population. Controlled access to these data for bona fide researchers is via application to the EXCEED study.

Highlights

  • In the United Kingdom (UK), the coronavirus disease 2019 (COVID-19) pandemic has highlighted stark pre-existing inequities: infection rates and mortality from COVID-19 are highest in those living in overcrowded housing and areas of deprivation, those working in high-risk occupations, and in those who have comorbidities[1]

  • Out of the 10,102 EXCEED participants recruited before 28 May 2020, 9,227 consented to share their data though UK Longitudinal Linkage Collaboration (UKLLC) and the current data analysis is based on these individuals

  • There were 750 participants who completed in the COVID-19 questionnaire but had not previously been part of the EXCEED study, 311 (41.5%) of whom reside in areas outside Leicester, Leicestershire, and Rutland

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Summary

Results

Out of the 10,102 EXCEED participants recruited before 28 May 2020, 9,227 consented to share their data though UK Longitudinal Linkage Collaboration (UKLLC) and the current data analysis is based on these individuals. 2,943 (31.9%) completed the EXCEED COVID-19 questionnaire between May 2020 – July 2021, and linked primary care electronic health records (EHRs) were available for 2,786 out of 2,943 participants (94.7%). The updated resource provides a valuable collection of data on COVID-19 infection status, by self-report of infection and/ or symptoms, plus data on a subset of participants from two serology substudies, to assess evidence of past infection and/or vaccination. All new data are in addition to the rich data already collected in EXCEED, including baseline questionnaire on health and lifestyle, spirometry, anthropometry, genotype data (EXCEED contributes to the COVID-19 host genetics initiative), and linkage to electronic healthcare records (EHRs), with consent to follow-up for 25 years. Please note that text data and any other data deemed potentially disclosive will not be released until they have been coded appropriately

Introduction
Materials and methods

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