Cohort validation pack

EXCEED

Extended Cohort for E-health, Environment and DNA

Generated 6 Oct 2026, 10:35 · ID 71

AI inferred

Last verified: 16/04/2026

Instructions for reviewers

Review each field against your knowledge of this cohort. Mark Accurate if the value is right, Needs correction if it is wrong or inaccurate (add notes), Not sure if you cannot verify it, or Does not apply if the field is not relevant.
Evidence shown is from our source registry. Fields marked No source yet hold values we could not yet pin to a document — those were AI-inferred and need your input most. Fields marked Searched — not published are ones we looked for and could not find publicly; the note lists where we checked.
Your selections and notes are kept in this browser tab only (not sent to the database). Print or save as PDF when finished, then return it to the DIGIT team.

Overview

Total fields

Field-cited

Whole-record source only

AI-inferred, no source yet

Searched — not published

No value held

Needs review

Source coverage

Summary of how well fields in this pack are linked to evidence.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Field-level source coverage Optional	40 of 67 reviewable fields are cited to a source (60%) · 7 with no source yet · 20 searched — not published · 18 with no value held	Computed	No citation linked to this field yet.	Response for Field-level source coverageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Identity and ownership

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Short name Required	EXCEED	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: Page heading “Welcome to the EXCEED Study” Page: https://exceed.org.uk/ Catalogue short label EXCEED taken from study acronym used on official site and cohort profile title.	Response for Short nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Full name Required	Extended Cohort for E-health, Environment and DNA	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Article title “Cohort Profile: Extended Cohort for E-health, Environment and DNA (EXCEED)” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Full nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Managing organisation Recommended	University of Leicester	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? (leadership sentence) “The study is led by the University of Leicester, in partnership with University Hospitals of Leicester NHS Trust and in collaboration with Leicestershire Partnership NHS Trust, local general practices and smoking cessation services.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ managing_organisation set to University of Leicester as named lead university.	Response for Managing organisationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Primary site Recommended	NIHR Leicester Biomedical Research Centre (site #64)	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Author affiliations (representative) “NIHR Leicester Biomedical Research Centre, University of Leicester, Leicester, UK” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ primary_site_id=64 maps to NIHR Leicester Biomedical Research Centre in this database as the seeded BRC anchor for Leicester-hosted respiratory/genetics infrastructure referenced in the profile.	Response for Primary siteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Website URL Recommended	https://exceed.org.uk/	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: Browser address “https://exceed.org.uk/” Page: https://exceed.org.uk/	Response for Website URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Catalogue of Mental Health Measures URL Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Catalogue of Mental Health Measures URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact name Recommended	No value held	Not published	Searched — not published UNSOURCEABLE as NULL: programme collaboration email is public; no single named contact field mandated on seed row.	Response for Contact nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact email Recommended	exceed@leicester.ac.uk	Field-cited	EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: Collaboration footer “We welcome requests for collaboration and data access via exceed@leicester.ac.uk” Page: https://exceed.org.uk/research/	Response for Contact emailAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Summary and status

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Description Required	Leicestershire-based general-population cohort (GP and community routes) combining baseline and repeat participant questionnaires, saliva DNA, genome-wide genotyping in a large subset, and long-term NHS electronic healthcare record linkage for multimorbidity and medicines-development relevant phenotypes.	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Why was the cohort set up? “EXCEED aims to develop understanding of the genetic, environmental and lifestyle-related causes of health and disease.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Description synthesises aims, multimorbidity/EHR linkage emphasis in the same section, and Leicester-area recruitment described under Who is in the cohort.	Response for DescriptionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N Required	11,000	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: Homepage headline counts “More than 11,000 people have already taken part in our research which is leading to discoveries that can improve and save lives.” Page: https://exceed.org.uk/ total_n rounded to 11000 as lower bound consistent with public counter text.	Response for Total NAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N qualifier Recommended	approximate	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: Homepage headline counts “More than 11,000 people have already taken part in our research which is leading to discoveries that can improve and save lives.” Page: https://exceed.org.uk/ Qualifier approximate because website uses \"More than\" rather than an audited closed cohort census.	Response for Total N qualifierAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Year established Recommended	2013	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? “Recruitment to the cohort has taken place since 22 November 2013, primarily from the general population through general practices in Leicester City, Leicestershire and Rutland.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Year establishedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Active cohort Recommended	Yes	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: How to take part “You can take part online by registering your email address, reading our participant information sheet, filling in the consent form, and completing two short questionnaires.” Page: https://exceed.org.uk/ Public site continues to invite participation and report ongoing studies -> is_active TRUE.	Response for Active cohortAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ongoing recruitment Recommended	Yes	Field-cited	EXCEED Study — Official home page https://exceed.org.uk/ Section: How to take part “You can take part online by registering your email address, reading our participant information sheet, filling in the consent form, and completing two short questionnaires.” Page: https://exceed.org.uk/	Response for Ongoing recruitmentAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Refreshed cohort Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? “Although a recruitment target of 10 000 has now been reached, community-based recruitment particularly focusing on minority ethnic groups will continue subject to further funding.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Ongoing targeted recruitment plus later COVID questionnaire waves imply continued refreshment beyond initial baseline window -> is_refreshed TRUE.	Response for Refreshed cohortAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recontact success rate Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: no recontact response rate published in sources on file.	Response for Recontact success rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Retention rate Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: cohort profile discusses loss-to-follow-up categories but no single retention_rate percentage provided for seed.	Response for Retention rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Published references Recommended	doi:10.1093/ije/dyz073	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Citation “doi:10.1093/ije/dyz073” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Array stores primary cohort profile DOI; supplementary Wellcome Open Res COVID paper cited on exceed.org.uk/research/ not duplicated here.	Response for Published referencesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Notes Recommended	Not MH-only: designed for genetic, environmental and lifestyle determinants of broad disease burden; depression and other MH conditions are measurable via linked primary care (e.g. QOF depression counts in cohort profile) and later COVID-era questionnaires covering anxiety, depression and loneliness (programme research pages).	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Multimorbidity + depression prevalence “Linkage to electronic health records (EHR) has enabled information on a broad range of diseases and risk factors to be studied in EXCEED and places multimorbidity at the study’s heart.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Notes field adds MH-relevance framing and points readers to Table 5 depression counts for diagnosis-area mapping. John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 “Depression” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Notes echo cohort SQL qualifier that QOF depression codes approximate MDD for feasibility mapping.	Response for NotesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

3D cohort mapping

Consent, characterisation, and data availability axes used on the cohort map.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Consent level (axis) Required	3 — Broad consent (recontactable for future studies)	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Consent “All participants consent to follow-up of their electronic health care records for up to 25 years, to storage and analysis of their DNA sample and to being contacted for further studies on the basis of their genetic data (recall-by-genotype) or health status (recall-by-phenotype).” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Step1 identifiable participants=YES. Step2 S251/CAG-only access=NO (individual informed consent). Step3 recontact for further studies=YES. Step4 blanket consent to interventional randomisation at enrolment not stated as TWiCs-style active research consent -> Level 3 per data-dictionary.md (broad consent + recontact).	Response for Consent level (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Characterisation depth (axis) Required	2 — Standardised MH instruments	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Baseline data collection for all participants included a self-completion questionnaire which collected detailed information on current and past smoking habits, smoking cessation attempts, e-cigarette and shisha usage, environmental tobacco smoke (second-hand smoke) exposure and alcohol use.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Step1: programme website documents later COVID questionnaires collecting mental health domains (anxiety, depression, loneliness) — see exceed.org.uk research source 171001; combined with baseline structured questionnaires and linked primary care phenotyping, this exceeds routine EHR-only MH coding, but no SCID/MINI programme is cited -> conservative characterisation_depth=2. EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: COVID-19 questionnaire 2 row “Mental health, including anxiety, depression, loneliness” Page: https://exceed.org.uk/research/ Supplementary evidence for structured mental health domain capture in repeat survey waves supporting Level 2 vs Level 1.	Response for Characterisation depth (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data availability (axis) Required	3 — Adds biological specimens/molecular data	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Finally, a saliva sample was collected from all participants either at their appointment or returned by post, for extraction of DNA.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ DERIVED per data-dictionary.md: hasResearch TRUE (questionnaires + linked records); hasBiological TRUE (saliva/DNA + genome-wide genotypes); hasAdvanced FALSE -> data_availability=3.	Response for Data availability (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cohort map group (derived) Recommended	Group 3	Internal	Internal catalogue field	—	—
Population type Recommended	General population	Not published	DIGIT Cohort Portfolio Review — population type and engagement classification (Aug 2026) Classified general_population in the DIGIT cohort portfolio review (Aug 2026). General-population cohort recruited via Leicestershire GP and community routes.	Response for Population typeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Industry engagement status Recommended	Unknown	Not published	Searched — not published UNSOURCEABLE: industry engagement status is an organisational property of the custodian and is not publicly documented; default 'unknown' pending a cohort-owner meeting.	Response for Industry engagement statusAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Parent cohort / programme Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Parent cohort / programmeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TWiCs eligible Recommended	No	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Consent “to being contacted for further studies on the basis of their genetic data (recall-by-genotype) or health status (recall-by-phenotype).” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Recall-by-genotype/phenotype substudies are described, but cohort-wide active interventional randomisation consent (TWiCs eligibility) is not evidenced -> twics_eligible FALSE.	Response for TWiCs eligibleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Data modalities

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Questionnaire / interview Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Baseline data collection for all participants included a self-completion questionnaire which collected detailed information on current and past smoking habits, smoking cessation attempts, e-cigarette and shisha usage, environmental tobacco smoke (second-hand smoke) exposure and alcohol use.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Self-completion research questionnaire administered to participants -> has_questionnaire_data TRUE per data-dictionary (structured PROs).	Response for Questionnaire / interviewAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cognitive testing Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: cohort profile and programme pages reviewed on file do not describe standardised cognitive test batteries (CANTAB/WAIS etc.).	Response for Cognitive testingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Physical measures Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Height, weight and waist circumference were either measured by a research professional or self-reported by postal participants. Those recruited face-to-face also had their hip circumference measured and, where feasible, underwent spirometric measurement of lung function.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Physical measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosamples Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Finally, a saliva sample was collected from all participants either at their appointment or returned by post, for extraction of DNA.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for BiosamplesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genomic data Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “To date, genome-wide genotype data (using the Affymetrix UK Biobank Axiom Array) are available for 5216 participants after quality control, enabling analysis of over 40 million variants after imputation to the Haplotype Reference Consortium (HRC) panel.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Genomic dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Omics Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: reviewed cohort profile sections on file cite genotyping/imputation but not proteomics/metabolomics/transcriptomics datasets.	Response for OmicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: no research imaging archive described in sources on file (imaging limited to clinical care context only).	Response for ImagingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Wearable / sensor Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: no wearable sensor data collection described in sources on file.	Response for Wearable / sensorAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Digital phenotyping Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: \"E-health\" in the cohort name is not evidenced on file as passive digital phenotyping (smartphone/sensor streams) per data-dictionary definition.	Response for Digital phenotypingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked health records Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Historically coded primary care data, transferred from paper records at the time of practice computerization, approximately mid-1990s, and since mid-1990s prospectively recorded consultations, with coded:” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Linked longitudinal NHS primary and secondary care extracts described -> has_linked_health_records TRUE.	Response for Linked health recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosample types Recommended	saliva	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “Finally, a saliva sample was collected from all participants either at their appointment or returned by post, for extraction of DNA.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Biosample typesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genotyping platform Recommended	Affymetrix UK Biobank Axiom Array (genome-wide genotype data available for 5216 participants after QC per 2019 cohort profile)	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “To date, genome-wide genotype data (using the Affymetrix UK Biobank Axiom Array) are available for 5216 participants after quality control” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ genotyping_platform column stores human-readable platform string derived from the same sentence.	Response for Genotyping platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging modalities Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: column NULL because has_imaging_data=FALSE.	Response for Imaging modalitiesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Mental health measures Recommended	Baseline self-completion questionnaire (smoking, alcohol and related behavioural items), Linked primary care QOF-coded depression and combined serious mental illness counts (IJE Table 5), COVID-19 questionnaire waves (programme site: anxiety, depression, loneliness domains)	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 “Depression” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ ARRAY includes QOF-coded depression prevalence pathway described in Table 5 alongside baseline smoking/alcohol questionnaire items (171000 baseline questionnaire quote on has_questionnaire_data). EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: COVID-19 questionnaire 2 row “Mental health, including anxiety, depression, loneliness” Page: https://exceed.org.uk/research/ Supplements ARRAY with COVID-era mental health domains captured in programme questionnaires.	Response for Mental health measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Data subcategories

Structured modality and subcategory rows used alongside the high-level data-type flags.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Data subcategories Recommended List key data subcategories using distinct rows for category markers, named questionnaire/interview instruments, biospecimen types, omics/genomics data products, imaging modalities, sensor streams, and linked-record types.	No value held	No source yet	No citation linked to this field yet.	Response for Data subcategoriesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Data subcategories

Recommended

List key data subcategories using distinct rows for category markers, named questionnaire/interview instruments, biospecimen types, omics/genomics data products, imaging modalities, sensor streams, and linked-record types.

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Consent and use permissions

Specific use permissions separate from the 3D consent-level axis.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Consent and use permissions Recommended Confirm health/biomedical research use, industry/commercial consideration, non-commercial restrictions, governance modifiers, recontact, trial approach, biosample use, linkage, sharing, international transfer, and any Section 251/CAG support.	No value held	No source yet	No citation linked to this field yet.	Response for Consent and use permissionsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Consent and use permissions

Recommended

Confirm health/biomedical research use, industry/commercial consideration, non-commercial restrictions, governance modifiers, recontact, trial approach, biosample use, linkage, sharing, international transfer, and any Section 251/CAG support.

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Access pathways

One or more routes by which researchers can request or analyse data.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Access pathways Recommended Confirm all data access pathways, including route, access level, TRE/SDE or download/API environment, DAC review, collaboration requirements, data sharing agreements, output checking, timelines, and fees.	No value held	No source yet	No citation linked to this field yet.	Response for Access pathwaysAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Access pathways

Recommended

Confirm all data access pathways, including route, access level, TRE/SDE or download/API environment, DAC review, collaboration requirements, data sharing agreements, output checking, timelines, and fees.

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Within-cohort coverage

Aggregate counts or percentages showing how broadly data, consent, or access characteristics apply within the cohort.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Within-cohort coverage metrics Recommended Provide numerator, denominator, unit type, numerator/denominator exactness qualifiers, denominator type, basis, date/release, original source wording, and whether each metric is marginal, joint, conditional, or a release total.	No value held	No source yet	No citation linked to this field yet.	Response for Within-cohort coverage metricsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Within-cohort coverage metrics

Recommended

Provide numerator, denominator, unit type, numerator/denominator exactness qualifiers, denominator type, basis, date/release, original source wording, and whether each metric is marginal, joint, conditional, or a release total.

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Linkage and access

Field	Current value	Evidence	Source evidence	Response	Notes / correction
NHS linkage Recommended	Yes	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: What has been measured? “There is also ongoing linkage to other sources of health data including: admissions, accident and emergency attendances and outpatient appointments via hospital episode statistics; pathology data (East Midlands Pathology Service); and the Myocardial Ischaemia National Audit (MINAP).” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for NHS linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
GP linkage Recommended	Yes	Field-cited	EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: Self-completion questionnaire timetable row “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.” Page: https://exceed.org.uk/research/	Response for GP linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Death registry linkage Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: mortality follow-up is discussed narratively but explicit civil registration / ONS death registration linkage is not named on reviewed pages.	Response for Death registry linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Education linkage Recommended	No	Not published	Searched — not published UNSOURCEABLE as FALSE: no education administrative linkage described in sources on file.	Response for Education linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access mechanism Recommended	collaboration	Field-cited	EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: Collaboration footer “We welcome requests for collaboration and data access via exceed@leicester.ac.uk” Page: https://exceed.org.uk/research/ Collaboration / application pathway rather than open bulk download -> data_access_mechanism=collaboration.	Response for Data access mechanismAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TRE platform Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: no named TRE product (e.g. UKB RAP) specified for EXCEED access on reviewed pages.	Response for TRE platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data dictionary URL Recommended	https://exceed.org.uk/research/	Field-cited	EXCEED Study — Research / data collection timetable https://exceed.org.uk/research/ Section: Data dictionary of questionnaires “Data dictionary of questionnaires:” Page: https://exceed.org.uk/research/ data_dictionary_url points to programme research hub listing questionnaire and EHR codebook PDFs.	Response for Data dictionary URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access timeline (days) Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: no median turnaround days published on collaboration pages reviewed.	Response for Data access timeline (days)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access cost Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: no public cost schedule on pages reviewed.	Response for Data access costAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Participant profile and dates

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Age distribution Recommended	No value held	Not published	Searched — not published UNSOURCEABLE for compact JSON age bins: profile reports eligible ages and Table 1 age bands for recruited vs invited populations but no single JSON-ready age_distribution table was transcribed into the seed row.	Response for Age distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Sex distribution Recommended	male: 0.445; female: 0.555	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? (after Table 1 reference) “Participants in the study were older and more likely to be female than the primary care population from which they were drawn.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ sex_distribution JSON numeric split (female 0.555 / male 0.445) taken from Table 1 recruited female cell 55.5% and male cell 44.5% in the same HTML table.	Response for Sex distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ethnicity distribution Recommended	asian: 0.048; black: 0.001; mixed: 0.01; other: 0.007; white: 0.927; chinese: 0.006	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 1 ethnicity rows (recruited % column) “92.7” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ JSON ethnicity_distribution aggregates recruited-column percentages from the same table: White 92.7; Asian/Asian British 4.8; Black/African/Caribbean/Black British 0.1; Mixed 1.0; Chinese 0.6; Other 0.7.	Response for Ethnicity distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Smoking status distribution Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Smoking status distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Median age Recommended	No value held	Not published	Searched — not published UNSOURCEABLE as NULL: median age not transcribed into scalar field (Table 1 uses age bands).	Response for Median ageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent female Recommended	55.50	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 1 (sex row, recruited % column) “55.5” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ percent_female=55.50 copied from recruited female percentage in primary-care-route Table 1.	Response for Percent femaleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent non-white Recommended	7.30	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 1 (White recruited %) “92.7” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ percent_non_white=7.30 derived as 100% minus White 92.7% for recruited primary-care-route participants.	Response for Percent non-whiteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Geographic coverage Recommended	regional	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? “primarily from the general population through general practices in Leicester City, Leicestershire and Rutland.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Mapped to geographic_coverage=regional (East Midlands catchment) per data-dictionary controlled vocabulary.	Response for Geographic coverageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Follow-up duration Recommended	Consent for up to 25 years EHR follow-up (IJE); baseline recruitment Nov 2013–Dec 2018 with ongoing programme waves (EXCEED site)	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Consent “All participants consent to follow-up of their electronic health care records for up to 25 years” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ followup_duration narrative also references ongoing programme waves documented on exceed.org.uk/research/ (separate source).	Response for Follow-up durationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Last data collection date Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: multiple rolling questionnaire waves; no single last_data_collection_date assigned.	Response for Last data collection dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment start date Recommended	22 Nov 2013	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Who is in the cohort? “Recruitment to the cohort has taken place since 22 November 2013, primarily from the general population through general practices in Leicester City, Leicestershire and Rutland.” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/	Response for Recruitment start dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment end date Recommended	No value held	Not published	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 UNSOURCEABLE as NULL: primary baseline window reported to 4 December 2018 but programme continued with further waves; no single closed recruitment_end_date assigned.	Response for Recruitment end dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Diagnosis areas

Mental health diagnosis areas represented in this cohort.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Diagnosis area: Major depressive disorder Recommended Confirm this diagnosis area applies and estimated N if shown.	Major depressive disorder · Mood Disorders · est. n=2,023	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 “2023” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 “Depression” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Notes echo cohort SQL qualifier that QOF depression codes approximate MDD for feasibility mapping. John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 footnote “Number of participants with one occurrence at any time of a diagnostic code listed in the Quality and Outcomes Framework for that condition; % is out of all participants for whom primary care data were available (8930).” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ prevalence_rate=2023/8930 rounded to 0.2265 for DIGIT; cohorts.total_n uses programme headline N so automated prevalence recomputation is excluded in cohort_prevalence_rates.sql. John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Table 5 (Depression row) “Depression” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ Row models major depressive disorder using QOF depression register counts among participants with linked primary care data (counts in sibling provenance rows).	Response for Diagnosis area: Major depressive disorderAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Diagnosis area: Major depressive disorder

Recommended

Confirm this diagnosis area applies and estimated N if shown.

Major depressive disorder · Mood Disorders · est. n=2,023

Field-cited

John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML)
https://doi.org/10.1093/ije/dyz073
Section: Table 5
“2023”
Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/
John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML)
https://doi.org/10.1093/ije/dyz073
Section: Table 5
“Depression”
Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/
Notes echo cohort SQL qualifier that QOF depression codes approximate MDD for feasibility mapping.
John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML)
https://doi.org/10.1093/ije/dyz073
Section: Table 5 footnote
“Number of participants with one occurrence at any time of a diagnostic code listed in the Quality and Outcomes Framework for that condition; % is out of all participants for whom primary care data were available (8930).”
Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/
prevalence_rate=2023/8930 rounded to 0.2265 for DIGIT; cohorts.total_n uses programme headline N so automated prevalence recomputation is excluded in cohort_prevalence_rates.sql.
John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML)
https://doi.org/10.1093/ije/dyz073
Section: Table 5 (Depression row)
“Depression”
Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/
Row models major depressive disorder using QOF depression register counts among participants with linked primary care data (counts in sibling provenance rows).

AccurateNeeds correctionNot sureDoes not apply

Linked sites

Sites contributing participants or data to this cohort.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Linked site: NIHR Leicester Biomedical Research Centre Recommended	NIHR Leicester Biomedical Research Centre · East Midlands	Field-cited	John et al. — EXCEED cohort profile, Int J Epidemiol 2019 (PMC HTML) https://doi.org/10.1093/ije/dyz073 Section: Leadership + affiliations “The study is led by the University of Leicester, in partnership with University Hospitals of Leicester NHS Trust” Page: https://pmc.ncbi.nlm.nih.gov/articles/PMC6659362/ site_id=64 chosen as NIHR Leicester BRC anchor matching Leicester partnership footprint. UNSOURCEABLE as NULL: no Leicester BRC-specific enrolled N split published versus wider East Midlands collaboration.	Response for Linked site: NIHR Leicester Biomedical Research CentreAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Verification metadata

Internal catalogue status — for reference only.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Verification status Recommended	ai_inferred	Internal	Internal catalogue field	—	—
Last verified Recommended	16 Apr 2026	Internal	Internal catalogue field	—	—
Data source Recommended	Populated Apr 2026 from John et al. International Journal of Epidemiology 2019 cohort profile (doi:10.1093/ije/dyz073; downloaded PMC HTML), exceed.org.uk home and research timetable pages (HTML 2026-04-16), and docs/data-dictionary.md scoring rules.	Internal	Internal catalogue field	—	—