Cohort validation pack

Genes & Health

Genes & Health (East London Genes & Health / ELGH)

Generated 6 Oct 2026, 10:35 · ID 76

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	51 of 72 reviewable fields are cited to a source (71%) · 7 with no source yet · 14 searched — not published · 17 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	Genes & Health	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: HTML title “Welcome to Genes & Health” Page: https://www.genesandhealth.org/	Response for Short nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Full name Required	Genes & Health (East London Genes & Health / ELGH)	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: TITLE “East London Genes & Health (ELGH), a community-based population genomics and health study in British Bangladeshi and British Pakistani people” Page: https://doi.org/10.1093/ije/dyz174 full_name includes current branding Genes & Health in cohort SQL plus ELGH historical label from cohort profile title.	Response for Full nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Managing organisation Recommended	Queen Mary University of London	Field-cited	Crossref API — IJE dyz174 metadata (author affiliations) https://doi.org/10.1093/ije/dyz174 Section: message.author[0].affiliation[0].name “Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK” Page: https://api.crossref.org/works/10.1093/ije/dyz174	Response for Managing organisationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Primary site Recommended	Queen Mary University of London (site #26)	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Main content “Join our community of 125,000 people to contribute to improve the health of future generations of British Pakistani and British Bangladeshi people.” Page: https://www.genesandhealth.org/ primary_site_id=26 (Queen Mary University of London) aligns with Crossref first-author Blizard/QMUL affiliation and DIGIT site seed for QMUL.	Response for Primary siteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Website URL Recommended	https://www.genesandhealth.org/	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: OpenGraph url “https://www.genesandhealth.org/” Page: https://www.genesandhealth.org/	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: no single named coordinator extracted into contact_name from reviewed static pages.	Response for Contact nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact email Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: homepage and key volunteer pages fetched Apr 2026 did not expose a single general-purpose contact_email string in static HTML.	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	Community-based genomic medicine and longitudinal health study of British Bangladeshi and British Pakistani adults (16+), led from Queen Mary with NHS-linked primary and secondary care data, saliva DNA, expanding exome/genotyping resources, recall studies (Whitechapel, Bradford, Manchester), and explicit community prioritisation including mental health research.	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Main content “British Bangladeshi and British Pakistani people have some of the highest rates of heart disease, diabetes, and poor health in the UK. Genes & Health is finding better ways to prevent, diagnose and treat these conditions, and many others, using genetic and health information.” Page: https://www.genesandhealth.org/	Response for DescriptionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N Required	125,000	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Main content “Join our community of 125,000 people to contribute to improve the health of future generations of British Pakistani and British Bangladeshi people.” Page: https://www.genesandhealth.org/	Response for Total NAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N qualifier Recommended	approximate	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Main content “Join our community of 125,000 people” Page: https://www.genesandhealth.org/ approximate per data-dictionary.md (round public counter).	Response for Total N qualifierAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Year established Recommended	2015	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Profile in a nutshell “ELGH was set up in 2015 to gain deeper understanding of health and disease, and underlying genetic influences, in British Bangladeshi and British Pakistani people living in east London.” Page: https://doi.org/10.1093/ije/dyz174	Response for Year establishedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Active cohort Recommended	Yes	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Main content “Join our community of 125,000 people” Page: https://www.genesandhealth.org/	Response for Active cohortAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ongoing recruitment Recommended	Yes	Field-cited	Genes & Health — Official Website https://www.genesandhealth.org/ Section: Call to action “Volunteer now” Page: https://www.genesandhealth.org/	Response for Ongoing recruitmentAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Refreshed cohort Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “At Genes & Health, we annually refresh our repository of health data from:” Page: https://www.genesandhealth.org/researchers/data/	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: IJE cites 30–40% completion for specific Stage 2 RbG studies, not a cohort-wide recontact_success_rate.	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: no single retention_rate for the whole programme in reviewed sources.	Response for Retention rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Published references Recommended	doi:10.1093/ije/dyz174	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: article-id_doi “doi:10.1093/ije/dyz174” Page: https://doi.org/10.1093/ije/dyz174	Response for Published referencesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Notes Recommended	Homepage (Apr 2026) cites ~125,000 volunteers; IJE 2020 cohort profile describes 2015 launch as ELGH with East London GP/community recruitment and Bradford expansion planned; current programme adds Manchester and richer omics/imaging-linked phenotypes per public data pages.	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Strengths and weaknesses “recruitment is expanding into outer London boroughs and a new Bradford Genes & Health.” Page: https://doi.org/10.1093/ije/dyz174 Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “learning disability” Page: https://www.genesandhealth.org/volunteer/mental-health/	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	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: INTRO “Stage 1 volunteers complete a brief questionnaire, give consent to lifelong EHR linkage and donate a saliva sample for DNA extraction and genetic tests.” Page: https://doi.org/10.1093/ije/dyz174 Step1 identifiable=YES. Step2 S251 without consent=NO. Step3 recontact for Stage2=YES. Step4 blanket interventional randomisation consent at enrolment=NO → consent_level 3.	Response for Consent level (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Characterisation depth (axis) Required	3 — Multi-domain MH characterisation	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “Other data collected at volunteer recall, or by REDCap or Qualtrics survey. For example: Attitudes towards the genetic risks associated with type 2-diabetes; a whole cohort mental health questionnaire and online cognitive assessment (2024-).” Page: https://www.genesandhealth.org/researchers/data/ Validated MH + cognitive modules plus rich linked NHS measures (BMI/BP/labs) support characterisation_depth=3; not Level4 (no SCID/MINI + refresh criterion).	Response for Characterisation depth (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data availability (axis) Required	4 — Multi-modal	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “NHS Secondary care (from London and Bradford NHS Trust hospitals). Includes diagnoses, pathology, inpatient prescribing, imaging results (and in some cases images), specialist datasets (e.g. iQemo, Aria).” Page: https://www.genesandhealth.org/researchers/data/ DERIVED: hasResearch TRUE; hasBiological TRUE; hasAdvanced TRUE (imaging) → level 4.	Response for Data availability (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cohort map group (derived) Recommended	Group 1	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). Community-based genomics cohort of British Bangladeshi and British Pakistani adults; no health-based entry criteria.	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	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Profile in a nutshell “Through Stage 2 studies, ELGH offers researchers the opportunity to undertake recall-by-genotype and/or recall-by-phenotype studies on volunteers. Subcohort studies, trials within cohort and other study designs are possible.” Page: https://doi.org/10.1093/ije/dyz174 twics_eligible=FALSE because data-dictionary.md requires consent_level=4 for TWiCs eligibility; cohort is consent_level 3.	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	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “The 1 page questionnaire at study entry. This questionnaire is designed to gather brief demographic information (for recontact and to obtain NHS number), current health status, including type-2 diabetes, and details on parental relatedness.” Page: https://www.genesandhealth.org/researchers/data/	Response for Questionnaire / interviewAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cognitive testing Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “a whole cohort mental health questionnaire and online cognitive assessment (2024-).” Page: https://www.genesandhealth.org/researchers/data/	Response for Cognitive testingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Physical measures Recommended	Yes	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 2 (Primary care EHR) “Clinical measurements, e.g. height, weight, body mass index, blood pressure” Page: https://doi.org/10.1093/ije/dyz174	Response for Physical measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosamples Recommended	Yes	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Genomics “DNA is extracted from the Oragene (DNA Genotek) saliva system and stored from all Stage 1 volunteers.” Page: https://doi.org/10.1093/ije/dyz174	Response for BiosamplesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genomic data Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Genetic Data “Illumina GSAv3 chip genotyping arrays (all volunteers, open access) with TOPMed-r3 imputation.” Page: https://www.genesandhealth.org/researchers/data/	Response for Genomic dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Omics Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Omic Data “single cell RNA-seq on 1,521 individuals (CARDINAL project, PI Nicole Soranzo). As well as additional CITEseq, ATACseq, 5'scRNAseq on smaller subsets.” Page: https://www.genesandhealth.org/researchers/data/	Response for OmicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “imaging results (and in some cases images)” Page: https://www.genesandhealth.org/researchers/data/	Response for ImagingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Wearable / sensor Recommended	No	Not published	FALSE: Health/Genetic/Omic sections on researchers/data page (Apr 2026 HTML) enumerate modalities and do not mention wearable/accelerometer sensor streams.	Response for Wearable / sensorAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Digital phenotyping Recommended	No	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “Other data collected at volunteer recall, or by REDCap or Qualtrics survey.” Page: https://www.genesandhealth.org/researchers/data/ FALSE per data-dictionary.md boundary: active surveys are not passive smartphone/sensor digital phenotyping.	Response for Digital phenotypingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked health records Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data intro “Genes & Health has generated and collated genetic and NHS health data from multiple sources, with individual written volunteer consent.” Page: https://www.genesandhealth.org/researchers/data/	Response for Linked health recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosample types Recommended	saliva, blood, plasma, urine, dna	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Genomics “DNA is extracted from the Oragene (DNA Genotek) saliva system and stored from all Stage 1 volunteers.” Page: https://doi.org/10.1093/ije/dyz174 Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Omic Data “participants contribute small samples of blood and/or urine.” Page: https://www.genesandhealth.org/researchers/data/	Response for Biosample typesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genotyping platform Recommended	Illumina Global Screening Array v3 (GSAv3) with TOPMed-r3 imputation; high-depth exome sequencing (Twist CRA) on volunteers (priority window for industry consortium partners described on programme data page)	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Genetic Data “Illumina GSAv3 chip genotyping arrays (all volunteers, open access) with TOPMed-r3 imputation.” Page: https://www.genesandhealth.org/researchers/data/	Response for Genotyping platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging modalities Recommended	secondary_care_imaging_results, clinical_images_where_available	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “imaging results (and in some cases images)” Page: https://www.genesandhealth.org/researchers/data/	Response for Imaging modalitiesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Mental health measures Recommended	Linked NHS primary care and secondary care diagnoses including mental health-related QOF domains and ICD-coded episodes (IJE Table 2), Whole-cohort mental health questionnaire and online cognitive assessment (programme data page; rollout described from 2024 onward), Community advisory board mental health research priority area (volunteer mental health web page)	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 2 “Quality and Outcomes Framework indicators: including care processes and outcomes for common diseases (e.g. diabetes, asthma, depression), public health concerns (smoking, obesity) and preventative measures (e.g. blood pressure checks)” Page: https://doi.org/10.1093/ije/dyz174 Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “a whole cohort mental health questionnaire and online cognitive assessment (2024-).” Page: https://www.genesandhealth.org/researchers/data/ Array in cohort SQL also lists QOF depression indicators (IJE Table2) and advisory-board priorities (volunteer mental health page) as separate TEXT[] elements. Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “The Genes & Health Community Advisory Board have prioritised mental health research.” Page: https://www.genesandhealth.org/volunteer/mental-health/	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	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “National NHS England (ex-NHS Digital) (including HES, cancer, maternity, demographics and multiple other datasets)” Page: https://www.genesandhealth.org/researchers/data/	Response for NHS linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
GP linkage Recommended	Yes	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “NHS Primary care (from London GP surgeries via Integrated Care Boards). Includes diagnoses, pathology, prescribing, demographics (including Townsend and IMD) and many other data types.” Page: https://www.genesandhealth.org/researchers/data/	Response for GP linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Death registry linkage Recommended	No	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Health Data “National NHS England (ex-NHS Digital) (including HES, cancer, maternity, demographics and multiple other datasets)” Page: https://www.genesandhealth.org/researchers/data/ FALSE: reviewed bullet list does not explicitly name ONS mortality; cohort SQL remains conservative pending custodian confirmation despite IJE mention of planned ONS mortality linkage.	Response for Death registry linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Education linkage Recommended	No	Not published	FALSE: no education/DfE administrative linkage named in IJE Table 2 external datasets excerpt or Apr 2026 researchers/data bullet list reviewed.	Response for Education linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access mechanism Recommended	tre	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Can I get hold of the data? “Individual-level phenotype data are held in an ISO27001 compliant data safe haven environment under data access agreement, currently hosted by the UK Secure e-Research Platform.” Page: https://doi.org/10.1093/ije/dyz174	Response for Data access mechanismAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TRE platform Recommended	UK Secure e-Research Platform (SeRP) style trusted environment for linked phenotype data (IJE cohort profile); see Genes & Health TRE documentation pages for current process	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Can I get hold of the data? “currently hosted by the UK Secure e-Research Platform” Page: https://doi.org/10.1093/ije/dyz174	Response for TRE platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data dictionary URL Recommended	https://www.genesandhealth.org/researchers/data/	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Browser address “https://www.genesandhealth.org/researchers/data/” Page: https://www.genesandhealth.org/researchers/data/ Programme-maintained researcher-facing modality summary used as practical data dictionary entry point.	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 numeric application-to-access turnaround quoted on reviewed static pages.	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: access costs vary by modality/partner and are not summarised as a single public tariff in reviewed sources.	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 as proportional age bins: IJE Table 1 reports median year of birth and ranges, not DIGIT-style JSON age_distribution without extra computation beyond verbatim quotes.	Response for Age distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Sex distribution Recommended	male: 0.44; female: 0.56	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 1 text “Male n = 13 928 (44%) Female n = 17 710 (56%)” Page: https://doi.org/10.1093/ije/dyz174 Mapped to JSON female 0.56 / male 0.44 from flattened Table 1 text in PMC BioC extract (tabs normalized to spaces for JSON).	Response for Sex distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ethnicity distribution Recommended	british_pakistani_or_pakistani: 0.33; british_bangladeshi_or_bangladeshi: 0.67	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 1 text “Bangladeshi or British Bangladeshi n = 21 083 (67%) Pakistani or British Pakistani n = 10 319 (33%)” Page: https://doi.org/10.1093/ije/dyz174 Single flattened Table 1 text excerpt encodes both ethnicity shares used in cohort ethnicity_distribution JSON (tabs normalized to spaces for JSON).	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	48.0	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 1 text “Year of birth n = 31 634 Median 1977” Page: https://doi.org/10.1093/ije/dyz174 Approximate median age from median birth year 1977 at Apr 2026; cohort SQL uses 48.0 as rounded snapshot. Tab in source flattened to space for JSON.	Response for Median ageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent female Recommended	56.00	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Table 1 text “Female n = 17 710 (56%)” Page: https://doi.org/10.1093/ije/dyz174	Response for Percent femaleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent non-white Recommended	No value held	Not published	Searched — not published UNSOURCEABLE as a single percent_non_white metric: cohort is intentionally focused on British Bangladeshi and British Pakistani participants; ethnicity_distribution JSON captures the intended breakdown.	Response for Percent non-whiteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Geographic coverage Recommended	national	Field-cited	Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Omic Data “clinical facilities located in Whitechapel, Bradford, or Manchester” Page: https://www.genesandhealth.org/researchers/data/ national chosen because programme integrates multi-city NHS and national NHS England datasets while targeting British South Asian communities UK-wide per public site.	Response for Geographic coverageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Follow-up duration Recommended	2015–present; NHS linkage with periodic extraction (IJE); annual curated health-data refresh per programme data page	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: How often have they been followed up? “Health data linkage and extraction takes place 3-monthly and ELGH volunteers have consented for lifelong EHR access, facilitating longitudinal follow-up.” Page: https://doi.org/10.1093/ije/dyz174	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: rolling linkage/recall; no single last_data_collection_date on reviewed summaries.	Response for Last data collection dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment start date Recommended	1 Apr 2015	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: INTRO “Between April 2015 and mid-June 2019, ELGH recruited 38 899 volunteers to Stage 1.” Page: https://doi.org/10.1093/ije/dyz174 recruitment_start_date=2015-04-01 aligns with April 2015 window.	Response for Recruitment start dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment end date Recommended	No value held	Not published	NULL: recruitment remains open on Apr 2026 homepage.	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	Field-cited	Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Major depressive disorder (diagnosis_area_id 5); estimated_n NULL in join SQL. UNSOURCEABLE: mutually exclusive MDD counts for expanded Genes & Health population not published in reviewed sources. UNSOURCEABLE: prevalence_rate not computed because estimated_n is NULL.	Response for Diagnosis area: Major depressive disorderAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Diagnosis area: Generalised anxiety disorder Recommended Confirm this diagnosis area applies and estimated N if shown.	Generalised anxiety disorder · Anxiety Disorders	Field-cited	Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Generalised anxiety disorder (id 8). UNSOURCEABLE: mutually exclusive GAD counts not published as stable denominators. UNSOURCEABLE: prevalence_rate not computed because estimated_n is NULL.	Response for Diagnosis area: Generalised anxiety disorderAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Diagnosis area: Dementia / neurodegeneration Recommended Confirm this diagnosis area applies and estimated N if shown.	Dementia / neurodegeneration · Neurodegenerative	Field-cited	Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “including conditions like depression, anxiety as well as dementia and learning disability.” Page: https://www.genesandhealth.org/volunteer/mental-health/ Dementia / neurodegeneration (id 20). UNSOURCEABLE: IJE Table 1 dementia count is snapshot among linked subset, not scalable to current ~125k volunteer total without custodian tables. UNSOURCEABLE: prevalence_rate not computed because estimated_n is NULL.	Response for Diagnosis area: Dementia / neurodegenerationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Diagnosis area: Gambling disorder Recommended Confirm this diagnosis area applies and estimated N if shown.	Gambling disorder · Substance Use	Field-cited	Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “learning disability” Page: https://www.genesandhealth.org/volunteer/mental-health/ Genes & Health — Volunteer: Mental Health https://www.genesandhealth.org/volunteer/mental-health/ Section: Main heading “learning disability” Page: https://www.genesandhealth.org/volunteer/mental-health/ Mapped to Intellectual disability and mental health (id 30). UNSOURCEABLE: no prevalence figure for learning disability strand on reviewed pages. UNSOURCEABLE: prevalence_rate not computed because estimated_n is NULL.	Response for Diagnosis area: Gambling disorderAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Linked sites

Sites contributing participants or data to this cohort.

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Linked site: Queen Mary University of London Recommended	Queen Mary University of London · London	Field-cited	Crossref API — IJE dyz174 metadata (author affiliations) https://doi.org/10.1093/ije/dyz174 Section: message.author[0].affiliation[0].name “Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK” Page: https://api.crossref.org/works/10.1093/ije/dyz174 site_id 26 Queen Mary University of London as managing university infrastructure. UNSOURCEABLE: no published per-site volunteer split for QMUL row in sources reviewed.	Response for Linked site: Queen Mary University of LondonAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked site: East London NHS Foundation Trust Recommended	East London NHS Foundation Trust · London	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Figure 2 caption text “all NHS GP-registered adults residing in the London Boroughs of City and Hackney, Newham, Tower Hamlets, Waltham Forest” Page: https://doi.org/10.1093/ije/dyz174 site_id 36 East London NHS Foundation Trust overlaps core east London recruitment geography. UNSOURCEABLE: no published ELFT-specific volunteer count in sources reviewed.	Response for Linked site: East London NHS Foundation TrustAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked site: Bradford Institute for Health Research Recommended	Bradford Institute for Health Research · Yorkshire and the Humber	Field-cited	Finer et al. — Cohort Profile: East London Genes & Health (ELGH), Int J Epidemiol 2020 (PMC7124496) https://doi.org/10.1093/ije/dyz174 Section: Strengths and weaknesses “recruitment is expanding into outer London boroughs and a new Bradford Genes & Health.” Page: https://doi.org/10.1093/ije/dyz174 site_id 35 Bradford Institute for Health Research as Bradford expansion partner. Genes & Health — Researchers: Data https://www.genesandhealth.org/researchers/data/ Section: Omic Data “clinical facilities located in Whitechapel, Bradford, or Manchester” Page: https://www.genesandhealth.org/researchers/data/ Supplementary evidence for Bradford recall site visits. UNSOURCEABLE: no published Bradford-site-only volunteer count in sources reviewed.	Response for Linked site: Bradford Institute for Health ResearchAccurateNeeds 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 genesandhealth.org (home, researchers/data, volunteer/mental-health), Finer et al. International Journal of Epidemiology 2020 cohort profile (doi:10.1093/ije/dyz174; PMC7124496 BioC text), Europe PMC metadata API, and docs/data-dictionary.md scoring rules.	Internal	Internal catalogue field	—	—