EXCEED is a longitudinal population-based cohort which facilitates the investigation of genetic, environmental and lifestyle-related determinants of a broad range of diseases and of multiple morbidity through data collected at baseline and via electronic healthcare record linkage. We are now also collecting COVID-19 data.
Participants have consented to follow-up for up to 25 years through electronic health records and additional bespoke data collection is planned.
|Questionnaire and description||Number of participants||Operating time||Follow-up studies|
Baseline data collection for all participants which collected detailed information on current and past smoking habits, smoking cessation attempts, e-cigarette and shisha usage, tobacco smoke (second-hand smoke) exposure and alcohol use.
Self-measured height, weight, waist circumference. (postal participants only)
|9,384||22nd November 2013 to 4th December 2018||Participants have consented to follow-up through linkage to Electronic Healthcare Records for up to 25 years. Linkage to electronic primary care records (i.e. records from the participant’s general practice) is undertaken upon completion of recruitment at each practice and has been completed for 8,930 participants.
DNA saliva sample was collected from 5216 participants.
|Research professional questionnaire
Records available from participants recruited via a face-to-face appointment.
Height, weight, waist circumference, hip circumference and spirometry exanimated by research professional.
(calculate from the number of unique EXCEED user id found from all research profession questionnaire records in database)
|22nd November 2013 to 4th December 2018||-|
|COVID-19 questionnaire 1
Risk factors and sequelae studies of the COVID-19; Indirect impacts of the COVID-19 pandemic on wellbeing; COVID-19 symptoms; General physical and mental health; Socioeconomic and environmental factors during the pandemic.
|3,693 (EXCEED participants)
2,943 (had not previously been part to the EXCEED study)
|28th May 2020 to 6th July 2021||A subset of those infected with COVID-19 experience persistent symptoms (or develop new clinical sequelae) lasting for at least 12 weeks after acute infection, not explained by an alternative diagnosis (‘post-COVID syndrome/long-COVID’) were invited to participate in COVID-19 serology sub studies. The Roche test kits that tested for total antibodies against the nucleocapsid protein were sent to 2,849 consented EXCEED participants.|
|COVID-19 questionnaire 2
Vaccination status, COVID-19 infection and symptoms; Physical health, including pain, current comorbidities and medical history, alcohol and smoking; Mental health, including anxiety, depression, loneliness; Housing, indoor air pollution and access to green space, and noise; Employment status, including furlough and benefits.
|2,784||6th July 2021 to 13th June 2022||All EXCEED participants who took the EXCEED Covid Survey were invited to take the EXCEED COVID Questionnaire2. It covers broad topics related to COVID such as vaccinations they have taken, pysical and metal health issues they have experienced, treatment they have received, as well as housing and their occupation situation and other questions on daily behaviour.|
|COVID antibody test questionnaire
A subset of the COVID-19 questionnaire respondents were invited to participate in COVID-19 serology sub studies, using home antibody testing kits.
|2,849||24th March 2021 to 22nd June 2021||-|
Data dictionary of questionnaires:Self completion questionnaire (current)
Self completion questionnaire (transfer)
Self completion questionnaire (v1)
Self completion questionnaire (v2)
Self completion questionnaire (v3)
Research professional questionnaire
COVID-19 questionnaire 1
COVID-19 questionnaire 2
COVID-19 antibody test questionnaire
Electronic Healthcare Records:Coded data from Primary Care Electronic Extraction: a description of GP practice registration and registration history data available from the primary care electronic healthcare record
Medication data from Primary Care Electronic Extraction: a description of the range of medication data available from the primary care electronic healthcare record
Vaccine data from Primary Care Electronic Extraction: a description of vaccination data available from the primary care electronic healthcare reacord
GP Patient Registration and Practice History data from Primary Care Electronic Extraction: a description of GP practice registration and registration history data available from the primary care electronic healthcare record
Appointment data from Primary Care Electronic Extraction: a description of the primary care appointment data available from the primary care electronic healthcare record
Referral data from Primary Care Electronic Extraction: a description of referral data available from the primary care electronic healthcare record
Codes not avaliable for researchers: Sensitive data codes that have been removed from EXCEED data
More information about the study, and the data we've collected, is available in our research publications:
Catherine John, Nicola F Reeve, Robert C Free, […] Edward J Hollox, Louise V Wain, Martin D Tobin. Cohort Profile: Extended Cohort for E-health, Environment and DNA (EXCEED). International Journal of Epidemiology, Volume 48, Issue 3, June 2019, Pages 678–679j, https://doi.org/10.1093/ije/dyz073
Lee PH, Guyatt AL, John C et al. Extended Cohort for E-health, Environment and DNA (EXCEED) COVID-19 focus [version 1; peer review: awaiting peer review]. Wellcome Open Res 2021, 6:349, https://doi.org/10.12688/wellcomeopenres.17437.1
We welcome requests for collaboration and data access via email@example.com
- The University of Leicester
- The NIHR Leicester Respiratory Biomedical Research Centre
- The NIHR Clinical Research Network East Midlands
- The Medical Research Council (grant G0902313)
- The Wellcome Trust (grant 202849)