Cohort validation pack

TwinsUK

TwinsUK: The UK Adult Twin Registry

Generated 6 Oct 2026, 10:37 · ID 11

Unverified

Last verified: 16/08/2026

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

118

Total fields

106

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	106 of 113 reviewable fields are cited to a source (94%) · 0 with no source yet · 7 searched — not published · 8 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	TwinsUK	Field-cited	TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Homepage title “TwinsUK - The biggest twin registry in the UK for the study of ageing related diseases” Page: https://twinsuk.ac.uk/	Response for Short nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Full name Required	TwinsUK: The UK Adult Twin Registry	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Introduction “The DTR encompasses the largest adult twin registry in the UK: TwinsUK.” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf full_name retained as TwinsUK: The UK Adult Twin Registry, matching the Verdi et al. 2019 cohort-update title and HDR UK Gateway naming.	Response for Full nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Managing organisation Recommended	Department of Twin Research & Genetic Epidemiology, King's College London	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Author affiliations “The Department of Twin Research, King's College London, St Thomas' Hospital, London, UK” Page: https://doi.org/10.1017/thg.2019.65 CORRECTED 2026-08-16 from the bare King's College London to the specific department that runs the registry, matching the Catalogue of Mental Health Measures institution field.	Response for Managing organisationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Primary site Recommended	Institute of Psychiatry, Psychology & Neuroscience (site #13)	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Author affiliations “The Department of Twin Research, King's College London, St Thomas' Hospital, London, UK” Page: https://doi.org/10.1017/thg.2019.65 primary_site_id=13 maps to the IoPPN row and is used as this database's King's College London anchor (same convention as DASH and TEDS). NOTE: the Department of Twin Research sits on the St Thomas' Hospital campus, a different King's department from the IoPPN, so the mapping is institutional rather than exact. A dedicated site row would be more precise.	Response for Primary siteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Website URL Recommended	https://twinsuk.ac.uk/	Field-cited	TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Homepage “Twin Research for a healthy future” Page: https://twinsuk.ac.uk/ CONFIRMED as the correct address, but flagged: on 2026-08-16 https://twinsuk.ac.uk/ presented an EXPIRED TLS CERTIFICATE. A strict HTTPS client refuses the connection (curl exit 60) and mainstream browsers show a full-page security interstitial; the page was retrievable only with certificate validation disabled. Anyone following this link from the catalogue will hit a browser warning. The previous provenance row quoted the URL string itself rather than any page text, which is not a quote — replaced with actual page content.	Response for Website URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Catalogue of Mental Health Measures URL Recommended	https://www.cataloguementalhealth.ac.uk/TwinsUK	Field-cited	Catalogue of Mental Health Measures https://www.cataloguementalhealth.ac.uk Section: Official sitemap study URL “https://www.cataloguementalhealth.ac.uk/TwinsUK” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Catalogue study record “TwinsUK is the UK's largest and the world's most clinically detailed adult twin registry” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK Exact cohort match. The stored value is set by db/seed/cohorts/999_catalogue-of-mental-health-measures-links.sql from the official catalogue sitemap. NOTE the catalogue's mental health measures timeline is empty for TwinsUK, so the record corroborates sample, linkage and access facts but not instruments.	Response for Catalogue of Mental Health Measures URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact name Recommended	TwinsUK / Department of Twin Research (general enquiries)	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Section: Accessing TwinsUK data and samples “victoria.vazquez@kcl.ac.uk” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ FILLED 2026-08-16 (was NULL). Stored as a role-based contact rather than a named individual, because the general enquiries address is the appropriate first point of contact for a catalogue entry; the named data access manager is recorded here in provenance.	Response for Contact nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact email Recommended	twinsuk@kcl.ac.uk	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Questions “twinsuk@kcl.ac.uk” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ FILLED 2026-08-16 (was NULL). General study contact. For data access submissions specifically the site directs enquiries to victoria.vazquez@kcl.ac.uk, the Collaborations and Data Access Manager.	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	National volunteer registry of adult twins, founded in 1992 to study osteoporosis and now comprising around 16,000 identical and non-identical twins aged 18-100 recruited UK-wide by media campaign without selecting for any disease or trait other than being a twin. Predominantly female (82%) with a mean age of 59. Over 10,000 phenotypes have been collected since 1992 through repeat clinical visits to the Department of Twin Research at St Thomas' Hospital, self-administered questionnaires sent every six to twelve months, and self-collected postal sample kits. The registry holds roughly 800,000 biological samples supporting genome-wide genotyping, sequencing, metabolomics, proteomics, microbiomics, transcriptomics and methylation, alongside DXA body composition, lung function, cognitive testing (CANTAB, verbal fluency, reaction time) and biochemical measures. Mental health is captured chiefly by the Hospital Anxiety and Depression Scale. NHS record linkage — HES admitted patient care, outpatient, A&E and critical care, the Emergency Care Dataset, the Mental Health Minimum Dataset, cancer registration and ONS mortality — is available for over 13,000 participants and is analysed inside a Trusted Research Environment.	Field-cited	Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Sample details “volunteer sample recruited by successive media campaigns without selecting for particular diseases or traits other than being twins” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK Supplies the recruitment model in the rewritten description. The description was expanded from two lines to a full profile covering scale, recruitment, phenotype breadth, omics, mental health measurement and NHS linkage. TwinsUK — Explore our Data and Samples https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ Section: TwinsUK Data and Samples “The TwinsUK resource stores and provides access to approximately 800,000 biological samples.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ Supplies the sample-scale figure and the over-10,000-phenotypes claim used in the description.	Response for DescriptionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N Required	16,000	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Introduction “TwinsUK is a national longitudinal cohort study founded in 1992, which now comprises 16,000 male and female, identical and non-identical twin participants aged 18-100.” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf CORRECTED 2026-08-16 from 15,000 to 16,000. The previous figure came from rounding the 14,838 in Verdi et al. 2019 and the homepage 15000+ badge. The August 2025 governance document and the Catalogue of Mental Health Measures (updated May 2026) both state 16,000, and the study's own linkage page uses 16,000 as its denominator. The homepage still says over 15,000 — that discrepancy is recorded in cohort notes. TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Data linkage “Linked electronic health records are currently available for over 13,000 of the 16,000 participants in the cohort” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Independent corroboration of the 16,000 denominator from the study's own researcher-facing page.	Response for Total NAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N qualifier Recommended	approximate	Field-cited	TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Homepage hero “We now have over 15,000 identical and non-identical twins from across the UK, with ages between eighteen and one hundred” Page: https://twinsuk.ac.uk/ Qualifier approximate: sources round to 15,000 or 16,000 and the registry recruits continuously, so no exact standing count exists. This quote is also the evidence for the homepage/policy discrepancy noted against total_n.	Response for Total N qualifierAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Year established Recommended	1992	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Introduction “The registry was started in 1992” Page: https://doi.org/10.1017/thg.2019.65	Response for Year establishedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Active cohort Recommended	Yes	Field-cited	TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Seeking Twins “We are always looking to expand our community and welcome new members.” Page: https://twinsuk.ac.uk/ TRUE: the registry is actively maintained and recruiting, with news items dated July 2026 on the homepage at time of access.	Response for Active cohortAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ongoing recruitment Recommended	Yes	Field-cited	TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Seeking Twins “We are always looking to expand our community and welcome new members.” Page: https://twinsuk.ac.uk/ TRUE. The Catalogue record adds that ongoing recruitment means more than 16,000 twins are now on the registry, and that approval has been obtained to recruit under-18s.	Response for Ongoing recruitmentAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Refreshed cohort Recommended	Yes	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of data collection “Self-administered questionnaires sent to the twin volunteers via email and post every six to twelve months” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf CORRECTED 2026-08-16 from FALSE to TRUE. The data-dictionary test is whether the cohort periodically re-assesses existing participants OR recruits new waves to maintain data currency — TwinsUK does both: questionnaires every 6-12 months, repeat clinic visit waves, postal sample kits, and continuous new recruitment. The previous FALSE was justified by a note about Level-4 characterisation, which is a different test on a different axis; is_refreshed does not require diagnostic-interview depth.	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 or response percentage is published, despite recontact being routine. The closest published figure is 5,364 respondents to the 2022 Longitudinal Core Questionnaire, which is recorded as a coverage metric because its denominator is not stated. Left NULL.	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 retention percentage is published. TwinsUK is a continuously recruiting registry rather than a fixed-baseline cohort with waves, so a single retention figure is not a natural statistic for it. Searched Verdi et al. 2019, the policy document, the Catalogue record and all site pages. Left NULL.	Response for Retention rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Published references Recommended	doi:10.1017/thg.2019.65, doi:10.12688/wellcomeopenres.14927.1, doi:10.1371/journal.pone.0134865, doi:10.1038/s41598-024-53929-w	Field-cited	Delanote J et al. Systematic identification of the role of gut microbiota in mental disorders: a TwinsUK cohort study. Sci Rep. 2024;14:3626. https://doi.org/10.1038/s41598-024-53929-w Section: Methods “Regarding the phenotypic variable on MD, different groups were specified according to the Hospital Anxiety and Depression (HADS) questionnaire” Page: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10864280/ ADDED 2026-08-16: the most recent mental-health-specific TwinsUK study found, and evidence of how HADS is operationalised into a mental-disorder phenotype in practice. Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: DOI metadata “The registry was started in 1992” Page: https://doi.org/10.1017/thg.2019.65 Array retained and extended to four DOIs: the 2019 cohort update (10.1017/thg.2019.65), the HADS data note (10.12688/wellcomeopenres.14927.1), the anxiety-sensitivity GWAS (10.1371/journal.pone.0134865, previously cited only in a join-table note) and the 2024 gut-microbiota mental disorders study (10.1038/s41598-024-53929-w).	Response for Published referencesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Notes Recommended	Registry scale is reported four different ways across the study's own current material: "over 15,000" on the twinsuk.ac.uk homepage, 16,000 in the DTR Data Access Policy (Aug 2025), 16,000 as the denominator on the data linkage page, "over 16,000" in the Catalogue of Mental Health Measures, and "over 17,000" on the site's Our Commitment to Diversity page. total_n follows the 16,000 figure carried by the governance document and two independent corroborations; the 15,000-17,000 spread is worth resolving with the study team. Ethnicity is not quantified anywhere, but the study states on its diversity page that only a small proportion of participants come from ethnic minority backgrounds and that health research has historically been based largely on White British populations. The registry absorbed twins from other sources including the Aberdeen Twin Registry and the Institute of Psychiatry Adult Registry. Governance note: since 2024 TwinsUK is run as an HRA-approved Programme of Research (IRAS 342169, REC 24/NW/0107) with broad ethics and consent covering future studies, sample collection and data sharing. WARNING for anyone following links: https://twinsuk.ac.uk/ served an expired TLS certificate on 2026-08-16, so browsers block it by default — worth raising with the study team.	Field-cited	TwinsUK — Our Commitment to Diversity https://twinsuk.ac.uk/our-commitment-to-diversity/ Section: Current representation in TwinsUK “While TwinsUK includes over 17,000 twins across the UK, we know that some groups are currently underrepresented.” Page: https://twinsuk.ac.uk/our-commitment-to-diversity/ A fourth registry-size figure on the study's own site, and the largest: over 17,000, against over 15,000 on the homepage and 16,000 in both the governance document and the linkage page. Recorded in notes so the spread is visible rather than silently resolved. TwinsUK — official website homepage https://twinsuk.ac.uk/ Section: Homepage hero “15000+” Page: https://twinsuk.ac.uk/ Documents the registry-size discrepancy recorded in notes: the homepage badge and prose still say 15,000+ while the August 2025 policy, the linkage page denominator and the Catalogue record all say 16,000.	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	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Introduction / governance “with broad ethics and consent covering all future studies, sample collections and sharing of data for health research” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf RE-DERIVED 2026-08-16 against the study's own governance document, replacing an earlier inference drawn from a data-request sentence. Step 1 identifiable: YES — a named volunteer registry that re-contacts participants every 6-12 months. Step 2 S251/CAG: NO — HRA-approved Programme of Research (IRAS 342169, REC 24/NW/0107) on individual broad consent. Step 3 recontact consent: YES — consent explicitly covers all future studies and sample collections, and recontact is exercised routinely. Step 4 interventional/randomisation consent: NO — no source states consent to randomisation, so Level 4 is not met. -> consent_level = 3. CONFIRMED, unchanged, now on much stronger evidence.	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	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: The Collection “which included collection of bone density/whole-body scan, cognitive and lung function, hearing and eye tests, fitness assessment” Page: https://doi.org/10.1017/thg.2019.65 Step 1 validated MH instruments: YES — HADS administered in 2006 and 2017. Step 2 multiple research domains beyond MH symptoms: YES — CANTAB and other cognitive testing, DXA body composition, lung function, hearing and eye tests, fitness, biochemistry, diet. Step 3 research-grade diagnostic interview (SCID/MINI/SCAN) AND actively refreshed: refreshed YES, but no structured diagnostic interview is documented anywhere — HADS is a screening scale. Both conditions are required for Level 4. -> characterisation_depth = 3. CONFIRMED. Note this is the ceiling for TwinsUK on this axis unless a diagnostic interview is added; its depth is in biology and physiology rather than psychiatric assessment.	Response for Characterisation depth (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data availability (axis) Required	4 — Multi-modal	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of Data Requests — Analysis of Existing Data “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf DERIVED by trigger per data-dictionary: hasResearch TRUE (questionnaires, cognitive, physical, linked records); hasBiological TRUE (biosamples, genomic, omics); hasAdvanced TRUE (has_imaging_data via DXA). hasAdvanced AND hasBiological -> 4. CONFIRMED, unchanged. Note the advanced-modality leg rests solely on DXA now that structural MRI has been removed as unsupported.	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	Field-cited	DIGIT Cohort Portfolio Review — population type and engagement classification (Aug 2026) Classified general_population in the DIGIT cohort portfolio review (Aug 2026). Adult twin registry recruited from the general population without health-based entry criteria. Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Sample details “volunteer sample recruited by successive media campaigns without selecting for particular diseases or traits other than being twins” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK general_population per the data-dictionary decision rule: no health-based entry criterion, the only selection being twin status. Explicitly not case_enriched (no self-selection on a condition), not clinical, not occupational, not a data_resource, not an umbrella. Twin registries are named in the rule as a general_population example.	Response for Population typeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Industry engagement status Recommended	Proven industry supplier	Field-cited	TwinsUK — Data Access Costs https://twinsuk.ac.uk/researchers/data-access-costs/ Section: Costs “Data/Samples access from Industry will require bespoke costs” Page: https://twinsuk.ac.uk/researchers/data-access-costs/ FILLED 2026-08-16 as proven — the strongest category, and evidenced twice over. Verdi et al. 2019 records completed industry work: exome sequencing projects with Pfizer Inc. and >30x whole-genome sequencing for 2,377 individuals through collaboration with Human Longevity, Inc. That satisfies the data-dictionary test of having supplied data or samples to at least one industry study. Separately, a documented route exists today: the study welcomes requests regardless of funding source and publishes a bespoke industry pricing line. Contrast with DASH, where this field is unknown pending an owner meeting.	Response for Industry engagement statusAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Parent cohort / programme Recommended	No value held	Not published	NULL: TwinsUK is a standalone registry, not a sub-study, extension, wave or umbrella member of another cohort in this database. It has absorbed twins from other registries (the Aberdeen Twin Registry and the Institute of Psychiatry Adult Registry), but those are sources of participants rather than parent cohorts, and neither has a row here.	Response for Parent cohort / programmeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TWiCs eligible Recommended	No	Field-cited	ISRCTN registry XML API search for TwinsUK https://www.isrctn.com/api/query/format/default?q=TwinsUK&limit=100 Section: ISRCTN XML API response “Macular pigment response to supplemental lutein and zeaxanthin: a twin heritability study” Page: https://www.isrctn.com/api/query/format/default?q=TwinsUK&limit=100 FALSE. TWiCs eligibility requires consent_level 4 (active interventional consent) plus randomisation infrastructure within the cohort; TwinsUK is consent_level 3. Mandated registry searches found that TwinsUK participants HAVE taken part in interventional studies — one ISRCTN record (a lutein/zeaxanthin supplement twin study) and three ClinicalTrials.gov records including a dietary composition trial — but these are separately registered studies recruiting from the registry, not trials randomised within a TWiCs framework. Worth revisiting with the study team, since the infrastructure and willingness may exist.	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	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of data collection “Self-administered questionnaires sent to the twin volunteers via email and post every six to twelve months” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf TRUE. Named validated instrument: HADS, administered 2006 and 2017 (Abbasian et al. 2019).	Response for Questionnaire / interviewAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cognitive testing Recommended	Yes	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 4 — cognitive and frailty phenotypes “CANTAB, Cambridge Neuropsychological Test Automated Battery” Page: https://doi.org/10.1017/thg.2019.65 TRUE per the data-dictionary TRUE-when rule: standardised cognitive tests administered, specifically CANTAB Paired Associates Learning (n=2,091), the Deary-Liewald Reaction Time Test (n=3,227) and verbal fluency (n=5,413).	Response for Cognitive testingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Physical measures Recommended	Yes	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: The Collection “which included collection of bone density/whole-body scan, cognitive and lung function, hearing and eye tests, fitness assessment” Page: https://doi.org/10.1017/thg.2019.65 TRUE. Table 2 gives counts for blood pressure (9,422 participants), lipid profile (8,496), respiratory function (8,880), hip and spine BMD, whole-body DXA (8,148), grip strength and BMI.	Response for Physical measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosamples Recommended	Yes	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Novel Molecular and Genetic Phenotypes “body fluids (blood, urine, saliva, stool and sebum) and tissue (hair follicle, colonic mucosa, fat and skin biopsy), have been generously donated.” Page: https://doi.org/10.1017/thg.2019.65 TRUE. The sentence begins on the preceding page (numerous biological samples, including...) and is split by a publisher footer in the PDF text layer; the quote above is the continuous portion. Roughly 800,000 samples are held per the study website.	Response for BiosamplesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genomic data Recommended	Yes	Field-cited	Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Data “Genetic data” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK TRUE. The Catalogue records genetic data as collected; Verdi et al. 2019 details genome-wide arrays, exome sequencing and >30x whole-genome sequencing in 2,377 individuals.	Response for Genomic dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Omics Recommended	Yes	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of Data Requests — Analysis of Existing Data “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf TRUE, and unusually broad: metabolomics, proteomics, microbiome, transcriptomics and methylation are all held. The word genetic appears twice in the source list; transcribed verbatim.	Response for OmicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging Recommended	Yes	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 — longitudinal clinical measures “Whole-body DXA” Page: https://doi.org/10.1017/thg.2019.65 TRUE, on DXA alone. The data dictionary lists DEXA explicitly among the modalities that make has_imaging_data TRUE. Whole-body DXA covers 8,148 participants across 17,690 measurements, plus hip and spine bone mineral density.	Response for ImagingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Wearable / sensor Recommended	No	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of data collection “Self-collected biological samples via postal kit” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf FALSE. The three listed collection modes are clinic visits, self-administered questionnaires and postal sample kits — no body-worn device stream. No accelerometry or actigraphy appears in Verdi et al. 2019, the policy document or the site's data categories.	Response for Wearable / sensorAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Digital phenotyping Recommended	No	Field-cited	TwinsUK — Explore our Data and Samples https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ Section: TwinsUK Data and Samples “Self-reported data” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ FALSE. The site's own data categories are self-reported data, physical measures, omics, samples, biochemical measures and linkage data. No passive smartphone or sensor stream is described in any source consulted.	Response for Digital phenotypingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked health records Recommended	Yes	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Data linkage “Linked electronic health records are currently available for over 13,000 of the 16,000 participants in the cohort” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ TRUE, and now with a coverage figure. Linked feeds are HES Admitted Patient Care, Outpatient, A&E and Critical Care, the Emergency Care Dataset, the Mental Health Minimum Dataset, cancer registration and ONS mortality.	Response for Linked health recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosample types Recommended	blood, urine, saliva, stool, sebum, hair follicle, colonic mucosa, fat, skin biopsy	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Novel Molecular and Genetic Phenotypes “body fluids (blood, urine, saliva, stool and sebum) and tissue (hair follicle, colonic mucosa, fat and skin biopsy), have been generously donated.” Page: https://doi.org/10.1017/thg.2019.65 EXPANDED 2026-08-16 from {blood, stool, urine, saliva, biopsy} to the nine specimen types actually named in the source. The previous generic biopsy is replaced by the three tissue types listed (colonic mucosa, fat, skin biopsy) plus hair follicle and sebum.	Response for Biosample typesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genotyping platform Recommended	Illumina HumanHap300 / HumanHap610 Quad genome-wide arrays, imputed to 1000 Genomes and HRC; whole-exome and whole-genome sequencing in subsets	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Genomewide Association Studies “projects with GoT2D consortium and Pfizer Inc.” Page: https://doi.org/10.1017/thg.2019.65 Platform string retained in substance (Illumina HumanHap300 / HumanHap610 Quad, imputed to 1000 Genomes and HRC, with exome and whole-genome sequencing in subsets) but the trailing per Verdi et al. 2019 citation was removed from the data value per playbook rule 6b — citations belong here, not in the field.	Response for Genotyping platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging modalities Recommended	dexa	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 — longitudinal clinical measures “Whole-body DXA” Page: https://doi.org/10.1017/thg.2019.65 CORRECTED 2026-08-16: structural_mri REMOVED, leaving {dexa}. Searched for MRI evidence in Verdi et al. 2019 (zero matches for MRI or neuroimaging; one match for magnetic resonance, referring to an NMR metabolomics platform, not imaging), the August 2025 DTR Data Access Policy (zero matches), and the site's own data-category listing (no imaging category). DXA is well evidenced. If TwinsUK does hold brain or joint MRI in a sub-study, it is not documented in any source consulted and should be re-added only with a citation.	Response for Imaging modalitiesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Mental health measures Recommended	Hospital Anxiety and Depression Scale (HADS)	Field-cited	Abbasian G et al. An overview of the TwinsUK cohort's anxiety and depression assessment, using the self-reported Hospital Anxiety and Depression Scale. Wellcome Open Res. 2019;4:10. https://doi.org/10.12688/wellcomeopenres.14927.1 Section: Abstract “The Hospital Anxiety and Depression (HADS) questionnaire, is a widely used questionnaire, both in the clinic and in research.” Page: https://doi.org/10.12688/wellcomeopenres.14927.1 HADS expanded to its full name for display. It remains the only validated mental health instrument documented for TwinsUK: the Catalogue of Mental Health Measures record for TwinsUK has an empty measures timeline, and no other named instrument appears in the sources consulted. This is the key limitation of TwinsUK as a mental health resource — enormous biological depth, a single screening scale for 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 modality: Blood sample Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · biosamples · biospecimen type · parent: Biospecimen collection · Blood collected at clinical visits	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “body fluids (blood, urine, saliva, stool and sebum) and tissue (hair follicle, colonic mucosa, fat and skin biopsy), have been generously donated.” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Blood sampleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: DNA sample Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · biosamples · biospecimen type · parent: Biospecimen collection · DNA extracted for genome-wide genotyping and sequencing	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “projects with GoT2D consortium and Pfizer Inc.” Page: https://doi.org/10.1017/thg.2019.65 DNA extracted for genome-wide genotyping and sequencing programmes described throughout the Novel Molecular and Genetic Phenotypes section.	Response for Data modality: DNA sampleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Saliva sample Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · biosamples · biospecimen type · parent: Biospecimen collection · Saliva collected at clinical visits	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “body fluids (blood, urine, saliva, stool and sebum) and tissue (hair follicle, colonic mucosa, fat and skin biopsy), have been generously donated.” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Saliva sampleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Urine sample Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · biosamples · biospecimen type · parent: Biospecimen collection · Urine collected at clinical visits	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “body fluids (blood, urine, saliva, stool and sebum) and tissue (hair follicle, colonic mucosa, fat and skin biopsy), have been generously donated.” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Urine sampleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Biospecimen collection Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · biosamples · category marker · Approximately 800,000 biological samples stored, many collected at multiple time points; ongoing collection includes self-collected postal kits	Field-cited	TwinsUK — Explore our Data and Samples https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ “The TwinsUK resource stores and provides access to approximately 800,000 biological samples.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/	Response for Data modality: Biospecimen collectionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Cognitive assessment data Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · cognitive measures · category marker · Cognitive testing at clinical visits	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “which included collection of bone density/whole-body scan, cognitive and lung function, hearing and eye tests, fitness assessment” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Cognitive assessment dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Cognitive function measures Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · cognitive measures · cognitive assessment · parent: Cognitive assessment data · CANTAB Paired Associates Learning (n=2,091), Deary-Liewald Reaction Time Test (n=3,227) and verbal fluency (n=5,413)	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 4 “CANTAB, Cambridge Neuropsychological Test Automated Battery” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Cognitive function measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Genotyping array Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · genomics · derived genomic data · Illumina HumanHap300 and HumanHap610 Quad genome-wide arrays, imputed to 1000 Genomes and HRC	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Data modality: Genotyping arrayAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Whole exome sequencing Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · genomics · derived genomic data · Exome sequencing in subsets, including projects with the GoT2D consortium and Pfizer Inc. · Subset only.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “projects with GoT2D consortium and Pfizer Inc.” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Whole exome sequencingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Whole genome sequencing Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · genomics · derived genomic data · Whole-genome sequencing at >30x coverage in a subset, via collaboration with Human Longevity, Inc. · Subset only, not the whole registry.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “collaboration with Human Longevity, Inc. (HLI)” Page: https://doi.org/10.1017/thg.2019.65 WGS at >30x coverage for 2,377 individuals; a subset of the registry.	Response for Data modality: Whole genome sequencingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Brain MRI Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	not available · imaging · category marker · Confirmed absence after targeted search of the cohort update paper, the 2025 data access policy and the study's own data-category listing: no MRI or neuroimaging is described anywhere. A previous claim of structural MRI in imaging_modalities was removed on this basis.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “CANTAB, Cambridge Neuropsychological Test Automated Battery” Page: https://doi.org/10.1017/thg.2019.65 Recorded not_available. Targeted search for MRI evidence returned nothing: zero matches for MRI or neuroimaging in Verdi et al. 2019, zero in the August 2025 policy, and no imaging category on the study data listing. Cognitive phenotypes here are behavioural test batteries, not imaging.	Response for Data modality: Brain MRIAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: DEXA Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · imaging · imaging modality · Dual-energy X-ray absorptiometry: whole-body DXA plus hip and spine bone mineral density · DXA is the only imaging modality evidenced for TwinsUK; see notes on the removal of structural MRI.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 “Whole-body DXA” Page: https://doi.org/10.1017/thg.2019.65 The only evidenced imaging modality for TwinsUK.	Response for Data modality: DEXAAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Linked NHS records Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available on application · linked health records · category marker · Includes the Mental Health Minimum Dataset covering specialist mental health service contacts and care — directly relevant to psychiatric comorbidity and treatment-pathway research	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “Mental Health Minimum Dataset (MHMDS)” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ The MHMDS feed is the single most relevant linkage for a mental health catalogue: specialist mental health service contacts and care, supporting service-use, comorbidity and treatment-pathway research.	Response for Data modality: Linked NHS recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Linked GP records Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	not available · linked health records · linked record type · parent: Linked NHS records · Recorded as a confirmed absence: no primary care or GP dataset appears on the study's data linkage page, which lists the available feeds explicitly.	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “Hospital Episode Statistics - Admitted Patient Care (HES APC)” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Recorded not_available: the linkage page enumerates every available feed and no primary care or GP dataset appears among them.	Response for Data modality: Linked GP recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Linked cancer registry Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available on application · linked health records · linked record type · parent: Linked NHS records · National Cancer Registration dataset for England, with national coverage since 1971	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “The National Cancer Registration dataset is the population-based cancer registry for England.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/	Response for Data modality: Linked cancer registryAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Linked death registry Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available on application · linked health records · linked record type · parent: Linked NHS records · ONS Civil Registration of Deaths for England and Wales	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “The Civil Registration of Deaths data set contains details of all registered deaths in England and Wales.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/	Response for Data modality: Linked death registryAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Linked hospital records Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available on application · linked health records · linked record type · parent: Linked NHS records · Hospital Episode Statistics: Admitted Patient Care, Outpatient, Accident & Emergency and Critical Care, plus the Emergency Care Dataset from April 2017	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “Hospital Episode Statistics - Admitted Patient Care (HES APC)” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/	Response for Data modality: Linked hospital recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: DNA methylation Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · omics · derived omics data · Methylation data listed among existing omics data in the DTR Data Access Policy	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Data modality: DNA methylationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Metabolomics Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · omics · derived omics data · Metabolomic profiling including Nightingale Health NMR and Metabolon platforms	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Data modality: MetabolomicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Proteomics Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · omics · derived omics data · Proteomics listed among existing omics data in the DTR Data Access Policy	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Omics: genetic data, metabolomics, genetic, proteomics, microbiome, transcriptomics (expression data), methylation” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Data modality: ProteomicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Clinical / physical measurements Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · physical measures · category marker · Repeat clinical visits to the Department of Twin Research covering bone density and whole-body scan, cognitive and lung function, hearing and eye tests and fitness assessment · Also includes grip strength, gait speed, chair stands and standing balance, which have no dedicated vocabulary keys.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 “which included collection of bone density/whole-body scan, cognitive and lung function, hearing and eye tests, fitness assessment” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Clinical / physical measurementsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Anthropometry Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · physical measures · clinical physical measure · parent: Clinical / physical measurements · BMI recorded for 20,881 measurements across 8,076 participants	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 “Whole-body DXA” Page: https://doi.org/10.1017/thg.2019.65 Same table reports BMI across 8,076 participants alongside the DXA and BMD rows.	Response for Data modality: AnthropometryAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Blood pressure / vitals Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · physical measures · clinical physical measure · parent: Clinical / physical measurements · Blood pressure recorded for 22,252 measurements across 9,422 participants	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 “Blood pressure 22,252 9422” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Blood pressure / vitalsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Body composition Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · physical measures · clinical physical measure · parent: Clinical / physical measurements · Whole-body DXA for 17,690 measurements across 8,148 participants; hip and spine bone mineral density also held	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 “Whole-body DXA 17,690 8148” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Body compositionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Lipid profile Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · physical measures · clinical physical measure · parent: Clinical / physical measurements · Lipid profile recorded for 18,933 measurements across 8,496 participants	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 “Lipid profile 18,933 8496” Page: https://doi.org/10.1017/thg.2019.65	Response for Data modality: Lipid profileAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: Questionnaire / interview data Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	available · questionnaires · category marker · Self-administered questionnaires sent by email and post every six to twelve months since 1992; over 10,000 phenotypes collected	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Self-administered questionnaires sent to the twin volunteers via email and post every six to twelve months” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Data modality: Questionnaire / interview dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data modality: GHQ-12 / GHQ Recommended Confirm this row is correctly typed as a category marker, named instrument/interview, biospecimen type, assay/data product, imaging modality, sensor stream, or linked-record type; add missing named instruments/sample types where known.	not available · questionnaires · questionnaire instrument · parent: Questionnaire / interview data · Recorded as a confirmed absence: no GHQ instrument is documented for TwinsUK. The registry's mental health screening instrument is HADS, which has no dedicated vocabulary key.	Field-cited	Abbasian G et al. An overview of the TwinsUK cohort's anxiety and depression assessment, using the self-reported Hospital Anxiety and Depression Scale. Wellcome Open Res. 2019;4:10. https://doi.org/10.12688/wellcomeopenres.14927.1 “The Hospital Anxiety and Depression (HADS) questionnaire, is a widely used questionnaire, both in the clinic and in research.” Page: https://doi.org/10.12688/wellcomeopenres.14927.1 Recorded not_available: TwinsUK screens mental health with HADS, not GHQ. HADS has no vocabulary key, so this row exists to make the distinction explicit rather than leave a silent gap.	Response for Data modality: GHQ-12 / GHQAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Consent and use permissions

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

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Consent/use: Biosample research use Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · biosample use · local operational permission · Participants with stored samples (~800,000 samples held) · Sample access is available through the same committee route as data; requests for samples attract bespoke costs.	Field-cited	TwinsUK — Explore our Data and Samples https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ “The TwinsUK resource stores and provides access to approximately 800,000 biological samples.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ Sample access runs through the same committee route as data; sample requests attract bespoke costs.	Response for Consent/use: Biosample research useAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Industry / commercial research considered Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · commercial use · local operational permission · All applicants · Industry access is explicitly provided for, with bespoke pricing for data and sample access from industry, and escalation of commercialisation matters to King's Research Management & Innovation Directorate.	Field-cited	TwinsUK — Data Access Costs https://twinsuk.ac.uk/researchers/data-access-costs/ “Data/Samples access from Industry will require bespoke costs” Page: https://twinsuk.ac.uk/researchers/data-access-costs/ Explicit provision for industry access, with a published pricing line and escalation of commercialisation matters to King's Research Management & Innovation Directorate.	Response for Consent/use: Industry / commercial research consideredAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Health record linkage permitted Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · data linkage · local operational permission · Over 13,000 of ~16,000 participants · NHS record linkage is established and available to researchers, not merely consented: HES APC/OP/AE/CC, ECDS, Mental Health Minimum Dataset, cancer registration and ONS mortality.	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ “Linked electronic health records are currently available for over 13,000 of the 16,000 participants in the cohort” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Distinct from DASH, where linkage was consented but never established: here the linkage exists and is available to researchers.	Response for Consent/use: Health record linkage permittedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Data sharing permitted Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · data sharing · local operational permission · All registry participants · The department states it aims to facilitate and encourage sharing of data and material with the world scientific community. Some omics datasets or subsets are deposited in public archives (ArrayExpress, EBI, EGA, GEO, ReShare UK Data Service).	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “The Department is looking to facilitate and encourage the access and sharing of data and material with the world scientific community” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf	Response for Consent/use: Data sharing permittedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Collaboration required Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	not permitted · governance · duo modifier · All applicants · Recorded as not required: the study explicitly welcomes requests from all researchers whatever their institution, location or funding source, and operates a supported-access model rather than mandating collaboration. Analysis support is offered but optional.	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ “We welcome requests from all researchers to access TwinsUK data and samples, whatever your research area, institution, location or funding source.” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Recorded not_permitted, i.e. collaboration is NOT required — a supported-access model. This is a meaningful contrast with cohorts such as TEDS and DASH, which route access through a named study-team collaborator.	Response for Consent/use: Collaboration requiredAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Ethics approval required Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · governance · duo modifier · All applicants · Data access applications must include ethics information alongside the scientific proposal.	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ “Ethics information” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Data access proposals must include ethics information alongside the scientific and funding sections.	Response for Consent/use: Ethics approval requiredAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Section 251 / CAG support Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	not applicable · governance · legal governance context · TwinsUK operates on individual broad informed consent under HRA Programme of Research approval, not Section 251/CAG support.	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “with broad ethics and consent covering all future studies, sample collections and sharing of data for health research” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf not_applicable: consent-based Programme of Research, not Section 251/CAG support.	Response for Consent/use: Section 251 / CAG supportAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: International data sharing / transfer permitted Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · international transfer · local operational permission · All applicants · The study welcomes requests regardless of the applicant's location, subject to the same committee approval and contracts.	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ “whatever your research area, institution, location or funding source” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Location-agnostic by explicit statement, subject to the same committee approval and contracts.	Response for Consent/use: International data sharing / transfer permittedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Participant recontact permitted Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · recontact · local operational permission · All registry participants · The registry actively re-contacts participants for questionnaires every six to twelve months, for repeat clinic visits and for postal sample kits, under the broad Programme of Research consent.	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “Self-administered questionnaires sent to the twin volunteers via email and post every six to twelve months” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Recontact is not merely permitted but routine and demonstrated, under the broad Programme of Research consent.	Response for Consent/use: Participant recontact permittedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: General research use Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	restricted · research use · duo permission · DUO:0000001 · All registry participants · Not open-ended: the request-access guidance states that projects should relate to health, well-being or disease, and applications outside that remit may not be supported.	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ “Projects should be related to health, well-being, or disease. Applications outside this remit may not be supported.” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Recorded restricted rather than permitted: research use is bounded to a health remit.	Response for Consent/use: General research useAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Health / medical / biomedical research use Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	permitted · research use · duo permission · DUO:0000002 · All registry participants · Broad ethics and consent covering all future studies, sample collections and sharing of data for health research, under HRA Programme of Research approval (IRAS 342169, REC 24/NW/0107). The access policy restricts projects to health, well-being or disease.	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf “with broad ethics and consent covering all future studies, sample collections and sharing of data for health research” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf HRA-approved Programme of Research (IRAS 342169, REC 24/NW/0107). An unusually clean consent basis: one broad approval covering future studies rather than per-study consent.	Response for Consent/use: Health / medical / biomedical research useAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Consent/use: Approach for trials permitted Recommended Confirm status, population scope, whether the permission is a DUO-style restriction/permission or a local operational permission, and whether academic and industry/commercial use differ.	unknown · trial approach · local operational permission · No source states that participants consented to be approached about clinical trials. TwinsUK participants have taken part in interventional nutrition and supplement studies registered separately, but no general trial-approach permission is documented for the registry. Confirm with the study team.	Field-cited	ISRCTN registry XML API search for TwinsUK https://www.isrctn.com/api/query/format/default?q=TwinsUK&limit=100 “Macular pigment response to supplemental lutein and zeaxanthin: a twin heritability study” Page: https://www.isrctn.com/api/query/format/default?q=TwinsUK&limit=100 UNKNOWN, deliberately not inferred. TwinsUK participants have taken part in separately registered interventional studies, but no source states a general permission to approach registry members about trials. Confirm with the study team.	Response for Consent/use: Approach for trials permittedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Access pathways

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

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Access pathway: Managed access / DAC Recommended Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.	available on application · access level: controlled · environment: secure download · DAC review required · data sharing agreement required · TwinsUK Resource Executive Committee (TREC) · GBP 1,140 basic/published datasets; GBP 1,620 omics; GBP 570 amendments; bespoke for industry, samples and new collections · https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ · All data access requests are overseen by TREC. Applicants complete a Data Access Proposal Form specifying individual variables with justification, plus ethics and funding information; proposals reach the next TREC meeting within four weeks of submission. Data may be used only for the approved project, must not be linked to other datasets, and untargeted bulk AI data requests are refused.	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Section: Accessing TwinsUK data and samples “We welcome requests from all researchers to access TwinsUK data and samples, whatever your research area, institution, location or funding source.” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ The committee-reviewed application route. The policy document adds that all data access requests are overseen by the TwinsUK Resource Executive Committee (TREC) and that proposals reach the next TREC meeting within four weeks of submission. Note the site calls it the Research Executive Committee while the policy calls it the Resource Executive Committee.	Response for Access pathway: Managed access / DACAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Access pathway: Open access Recommended Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.	available · access level: registered · environment: download · Public omics archives (ArrayExpress, EBI, EGA, GEO, ReShare UK Data Service) · Free · Whole or subset omics datasets are deposited on archived platforms. Access terms are set by each archive — EGA in particular is itself controlled-access — so this route is not open access in the unrestricted sense.	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Samples & Omics “Note that whole or subset of some omics datasets are deposited on archived platforms” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Recorded because some omics subsets are discoverable outside the application route, but flagged in the row notes as not unrestricted: the named archives include EGA, which is itself controlled-access.	Response for Access pathway: Open accessAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Access pathway: Trusted Research Environment Recommended Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.	available on application · access level: secure environment · environment: tre sde · DAC review required · data sharing agreement required · output checking required · TwinsUK / King's College London Trusted Research Environment (TRE) · As per the standard access costs · https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ · Mandatory for any work involving linked NHS records. Outputs are disclosure-checked before release; approved projects are provisioned with remote access and standard tools (R, Stata, Python). Linked records cover over 13,000 of ~16,000 participants.	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Working with Linked Data “All linked data work must take place within the secure TwinsUK Trusted Research Environment (TRE), where outputs are disclosure-checked prior to release.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ A genuinely separate pathway, mandatory for linked NHS records, with disclosure control on outputs and remote analysis in R, Stata or Python.	Response for Access pathway: Trusted Research EnvironmentAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Access pathway: Managed access / DAC

Recommended

Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.

available on application · access level: controlled · environment: secure download · DAC review required · data sharing agreement required · TwinsUK Resource Executive Committee (TREC) · GBP 1,140 basic/published datasets; GBP 1,620 omics; GBP 570 amendments; bespoke for industry, samples and new collections · https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ · All data access requests are overseen by TREC. Applicants complete a Data Access Proposal Form specifying individual variables with justification, plus ethics and funding information; proposals reach the next TREC meeting within four weeks of submission. Data may be used only for the approved project, must not be linked to other datasets, and untargeted bulk AI data requests are refused.

Field-cited

TwinsUK — Accessing TwinsUK data and samples (request access)
https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/
Section: Accessing TwinsUK data and samples
“We welcome requests from all researchers to access TwinsUK data and samples, whatever your research area, institution, location or funding source.”
Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/
The committee-reviewed application route. The policy document adds that all data access requests are overseen by the TwinsUK Resource Executive Committee (TREC) and that proposals reach the next TREC meeting within four weeks of submission. Note the site calls it the Research Executive Committee while the policy calls it the Resource Executive Committee.

AccurateNeeds correctionNot sureDoes not apply

Access pathway: Open access

Recommended

Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.

available · access level: registered · environment: download · Public omics archives (ArrayExpress, EBI, EGA, GEO, ReShare UK Data Service) · Free · Whole or subset omics datasets are deposited on archived platforms. Access terms are set by each archive — EGA in particular is itself controlled-access — so this route is not open access in the unrestricted sense.

Field-cited

Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025)
https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf
Section: Samples & Omics
“Note that whole or subset of some omics datasets are deposited on archived platforms”
Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf
Recorded because some omics subsets are discoverable outside the application route, but flagged in the row notes as not unrestricted: the named archives include EGA, which is itself controlled-access.

AccurateNeeds correctionNot sureDoes not apply

Access pathway: Trusted Research Environment

Recommended

Confirm route, access level, environment type, DAC review, collaboration, data sharing agreement, output checking, platform, timeline, cost, URL, and whether multiple routes are possible.

available on application · access level: secure environment · environment: tre sde · DAC review required · data sharing agreement required · output checking required · TwinsUK / King's College London Trusted Research Environment (TRE) · As per the standard access costs · https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ · Mandatory for any work involving linked NHS records. Outputs are disclosure-checked before release; approved projects are provisioned with remote access and standard tools (R, Stata, Python). Linked records cover over 13,000 of ~16,000 participants.

Field-cited

TwinsUK — Data Linkage for Researchers
https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/
Section: Working with Linked Data
“All linked data work must take place within the secure TwinsUK Trusted Research Environment (TRE), where outputs are disclosure-checked prior to release.”
Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/
A genuinely separate pathway, mandatory for linked NHS records, with disclosure control on outputs and remote analysis in R, Stata or Python.

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
Coverage: HADS questionnaires completed and returned Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	9,227 · unit: responses · denominator: unknown · basis: completed · status: available · release: HADS 2006 + 2017 merged release · scope: marginal · source value: Overall a total of 9227 questionnaires have been completed and returned from which 5169 were returned in 2006 and 4058 in 2017 · IMPORTANT: unit is responses, not participants — 2,470 individuals contributed more than one time point, so the number of distinct people is materially lower and is not published. This figure was previously stored as estimated_n for depression in cohort_diagnosis_areas, which was wrong on both counts, and has been removed there.	Field-cited	Abbasian G et al. An overview of the TwinsUK cohort's anxiety and depression assessment, using the self-reported Hospital Anxiety and Depression Scale. Wellcome Open Res. 2019;4:10. https://doi.org/10.12688/wellcomeopenres.14927.1 Section: Dataset description “Overall a total of 9227 questionnaires have been completed and returned from which 5169 were returned in 2006 and 4058 in 2017.” Page: https://doi.org/10.12688/wellcomeopenres.14927.1 unit_type is responses, not participants — this is the correction of a real error. The figure previously sat in cohort_diagnosis_areas as estimated_n for depression, implying 9,227 people with depression. No participant-level denominator is published, so denominator_n is NULL rather than assumed.	Response for Coverage: HADS questionnaires completed and returnedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Coverage: Participants with CANTAB Paired Associates Learning Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	2,091 · unit: participants · denominator: unknown · basis: collected · status: available · scope: marginal · source value: CANTAB Paired Associates Learning 2091 · Shows that the deepest cognitive testing covers a modest subset of the registry, unlike the questionnaire and DXA measures.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 4 — cognitive and frailty phenotypes “CANTAB Paired Associates Learning 2091” Page: https://doi.org/10.1017/thg.2019.65 Shows that the deepest cognitive measure covers a modest subset relative to the questionnaire and DXA measures — useful context for anyone assuming registry-wide cognitive data.	Response for Coverage: Participants with CANTAB Paired Associates LearningAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Coverage: Participants with linked NHS electronic health records Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	> 13,000 / c. 16,000 (81.25% indicative) · unit: participants · denominator: total cohort · basis: linked · status: available on application · scope: marginal · source value: Linked electronic health records are currently available for over 13,000 of the 16,000 participants in the cohort · The single most decision-relevant coverage figure for TwinsUK: NHS linkage (HES, ECDS, Mental Health Minimum Dataset, cancer registration, ONS mortality) reaches roughly four fifths of the registry. Numerator is a published lower bound; the denominator is the study's own rounded registry size.	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Data linkage “Linked electronic health records are currently available for over 13,000 of the 16,000 participants in the cohort” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Numerator and denominator both explicit in one sentence. Numerator qualifier is more_than because the source says over 13,000; denominator qualifier is approximate because 16,000 is the study's own rounded registry size.	Response for Coverage: Participants with linked NHS electronic health recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Coverage: Participants with whole-body DXA Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	8,148 · unit: participants · denominator: unknown · basis: collected · status: available · scope: marginal · source value: 17,690 measurements across 8,148 participants · 17,690 total measurements were recorded over a maximum 21.5-year follow-up; the distinct participant count is used as the numerator. No cohort denominator is published alongside it.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Table 2 — longitudinal clinical measures “Whole-body DXA” Page: https://doi.org/10.1017/thg.2019.65 Table 2 reports 17,690 measurements across 8,148 participants with a maximum follow-up of 21.5 years. The participant count is the numerator; the table states no cohort denominator, so denominator_n is NULL.	Response for Coverage: Participants with whole-body DXAAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Coverage: Participants with whole-genome sequencing at >30x Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	2,377 · unit: participants · denominator: unknown · basis: available to researchers · status: available · scope: marginal · source value: WGS of >30x coverage was carried out through collaboration with Human Longevity, Inc. (HLI) for 2377 individuals · Subset of the registry, not whole-cohort sequencing. Genome-wide array genotyping covers a much larger share but no single published figure was found for it in this pass.	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Genomewide Association Studies “collaboration with Human Longevity, Inc. (HLI)” Page: https://doi.org/10.1017/thg.2019.65 WGS at >30x coverage for 2,377 individuals. Recorded to make explicit that deep sequencing is a subset, not registry-wide.	Response for Coverage: Participants with whole-genome sequencing at >30xAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Coverage: Respondents to the most recent questionnaire sweep Recommended Confirm numerator, denominator, unit type, exactness qualifiers, denominator type, basis, as-of date/release, source wording, and whether the metric is marginal, joint, conditional, or a release total.	5,364 / c. 16,000 (33.53% indicative) · unit: participants · denominator: total cohort · basis: completed · status: available · release: 2022 Longitudinal Core Questionnaire (LCQ) · as of 31 Dec 2022 · scope: marginal · source value: 5,364 (2022 - LCQ) · Reported by the Catalogue of Mental Health Measures as the sample size at the most recent sweep. Denominator is the study's rounded registry size and is not stated by the catalogue, hence the approximate qualifier.	Field-cited	Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Sample “5,364 (2022 - LCQ)” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK Sample size at the most recent sweep per the Catalogue record. The denominator is not stated by the catalogue; the study's rounded registry size is used with an approximate qualifier.	Response for Coverage: Respondents to the most recent questionnaire sweepAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Linkage and access

Field	Current value	Evidence	Source evidence	Response	Notes / correction
NHS linkage Recommended	Yes	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Data linkage “Mental Health Minimum Dataset (MHMDS)” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ CORRECTED 2026-08-16 from FALSE to TRUE — the single most consequential correction in this audit. The record previously said TwinsUK had no NHS linkage. It has HES Admitted Patient Care, Outpatient, A&E and Critical Care, plus the Emergency Care Dataset and, notably for a mental health catalogue, the Mental Health Minimum Dataset covering specialist mental health service contacts and care. The earlier FALSE was defensible against Verdi et al. 2019, which said such links were being established at present; the study's live researcher page now states they are available.	Response for NHS linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
GP linkage Recommended	No	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Data linkage “Hospital Episode Statistics - Admitted Patient Care (HES APC)” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ FALSE. The linkage page enumerates the available datasets explicitly and no primary care or GP feed appears among them.	Response for GP linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Death registry linkage Recommended	Yes	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Cognitive and frailty phenotypes “TwinsUK has data linkage to official cancer and mortality data for retrospective analysis and future follow-up.” Page: https://doi.org/10.1017/thg.2019.65 TRUE, confirmed. The current linkage page names the specific feed: ONS Civil Registration of Deaths for England and Wales.	Response for Death registry linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Education linkage Recommended	No	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of Data — Linkage Data “These linkages are in development.” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf FALSE retained, but this is a genuine three-way source conflict and is flagged for the study team. The August 2025 policy says health, education and environmental linkages are in development. The live linkage page lists only health, cancer and mortality feeds as available — no education. The Catalogue of Mental Health Measures record lists Education data under linkage to administrative data. The custodian's own researcher-facing availability list is treated as authoritative for what can actually be accessed today.	Response for Education linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access mechanism Recommended	direct_application	Field-cited	TwinsUK — Accessing TwinsUK data and samples (request access) https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ Section: Accessing TwinsUK data and samples “We welcome requests from all researchers to access TwinsUK data and samples, whatever your research area, institution, location or funding source.” Page: https://twinsuk.ac.uk/researchers/access-data-and-samples/request-access/ direct_application: researchers submit a Data Access Proposal Form to the TwinsUK Resource Executive Committee. A TRE pathway also exists and is mandatory for linked NHS records; both are recorded as cohort_access_pathways rows.	Response for Data access mechanismAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TRE platform Recommended	TwinsUK / King's College London Trusted Research Environment (TRE)	Field-cited	TwinsUK — Data Linkage for Researchers https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ Section: Working with Linked Data “All linked data work must take place within the secure TwinsUK Trusted Research Environment (TRE), where outputs are disclosure-checked prior to release.” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/data-linkage-for-researchers/ FILLED 2026-08-16 (was NULL). The same page names the environment both ways — TwinsUK TRE and King's College London TRE — so the stored value carries both. Approved projects get remote access with standard tools (R, Stata, Python).	Response for TRE platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data dictionary URL Recommended	https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/	Field-cited	TwinsUK — Explore our Data and Samples https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ Section: Phenotypes “Over 10,000 phenotypes have been collected on Twins since 1992” Page: https://twinsuk.ac.uk/researchers/explore-our-data-and-samples/ CORRECTED 2026-08-16. The previous value, https://twinsuk.ac.uk/resources-for-researchers/access-our-data/, now returns HTTP 404 — the site was restructured from /resources-for-researchers/ to /researchers/. The new value is the explore-our-data-and-samples page, which hosts the downloadable phenotype list and omics overview. That same dead URL is still printed in Verdi et al. 2019 and repeated in the paper's data-availability statement.	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 as application-to-access time. The only published timing is that all proposals will be submitted to TREC within four weeks from submission — that is time to committee, not time to data, and recording 28 here would materially overstate how quickly a researcher obtains data. The four-week fact is captured in the managed_access_dac pathway notes instead. Left NULL.	Response for Data access timeline (days)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access cost Recommended	Cost recovery: GBP 1,140 basic/published datasets; GBP 1,620 omics; GBP 570 amendments; bespoke pricing for industry, samples and new collections	Field-cited	TwinsUK — Data Access Costs https://twinsuk.ac.uk/researchers/data-access-costs/ Section: Costs “GBP 1140 - for basic and published datasets” Page: https://twinsuk.ac.uk/researchers/data-access-costs/ FILLED 2026-08-16 (was NULL). Published tariff: GBP 1,140 basic and published datasets, GBP 1,620 omics data, GBP 570 amendments, on a stated cost-recovery basis for academic researchers, with bespoke pricing for industry, samples, new collections and complex requests. The pound signs render as GBP in the extracted text layer.	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	Mean age: 59; Age range: 18-100; Age at recruitment: 18+ (approval obtained to recruit under-18s)	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Introduction “16,000 male and female, identical and non-identical twin participants aged 18-100” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf EXPANDED 2026-08-16. The previous value was a single opaque key (mean_age_59). It now carries three display-ready keys: the 18-100 age range from the governance document and Catalogue record, the mean age of 59, and the recruitment age floor with the note that approval has been obtained to recruit under-18s. No banded age distribution is published. Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Sample details “The majority of the twins are female, with a mean age of 59.” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK Independent corroboration of the mean age, and of the 18+ recruitment floor recorded in the third key.	Response for Age distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Sex distribution Recommended	Male: 0.18; Female: 0.82	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Abstract “it is predominantly female (82%) and middle-aged (mean age 59).” Page: https://doi.org/10.1017/thg.2019.65 Female 0.82 is published; male 0.18 is the remainder to 1.0 and is a derivation, not a published figure. Keys made display-ready as Female/Male.	Response for Sex distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ethnicity distribution Recommended	Numeric breakdown: Not published; Ethnic minority participants: Only a small proportion, and the study states some groups are underrepresented	Field-cited	TwinsUK — Our Commitment to Diversity https://twinsuk.ac.uk/our-commitment-to-diversity/ Section: Current representation in TwinsUK “Only a small proportion of participants come from” Page: https://twinsuk.ac.uk/our-commitment-to-diversity/ FILLED 2026-08-16, replacing an UNSOURCEABLE note. Corrected search: the earlier pass looked for ethnic and race and found nothing, and did not look for ancestry, White, European, or a study diversity statement. Re-searched properly: Verdi et al. 2019 and the Aug 2025 policy contain zero matches for ancestry, Caucasian, white or ethnic; the 2013 IJE cohort profile (PMC3600616) also carries no ethnicity statement, describing recruitment only as from all over the United Kingdom. The study does however address it directly on its own participant-facing diversity page, which states that only a small proportion of participants come from ethnic minority backgrounds and that some groups are currently underrepresented. Stored qualitatively because no percentage is published anywhere; the same page notes that health research has historically been based largely on White British populations.	Response for Ethnicity distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Smoking status distribution Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: no aggregate smoking-status distribution is published for TwinsUK in any source consulted (Verdi et al. 2019, the August 2025 policy, the Catalogue record, the homepage and all four researcher pages). Smoking is near-certainly held as a phenotype among the 10,000+ collected, but a published breakdown would be needed to fill this. Left NULL.	Response for Smoking status distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Median age Recommended	59.0	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Abstract “middle-aged (mean age 59)” Page: https://doi.org/10.1017/thg.2019.65 59.0 stored. CAVEAT: the published statistic is a MEAN, not a median; it is recorded here because the schema has no mean_age column and 59 is the study's own headline age figure. Corroborated by the Catalogue record.	Response for Median ageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent female Recommended	82.00	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Abstract “it is predominantly female (82%)” Page: https://doi.org/10.1017/thg.2019.65 82.00 as published. The strong female skew is a real design consideration for anyone planning a study in this cohort — the registry began with media campaigns targeted at middle-aged women. TwinsUK — Our Commitment to Diversity https://twinsuk.ac.uk/our-commitment-to-diversity/ Section: Current representation in TwinsUK “82% of participants are women” Page: https://twinsuk.ac.uk/our-commitment-to-diversity/ Independent corroboration of the 82% figure from the study's own current site, seven years after the Verdi et al. 2019 abstract reported the same share.	Response for Percent femaleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent non-white Recommended	No value held	Field-cited	TwinsUK — Our Commitment to Diversity https://twinsuk.ac.uk/our-commitment-to-diversity/ Section: Current representation in TwinsUK “Only a small proportion of participants come from” Page: https://twinsuk.ac.uk/our-commitment-to-diversity/ NULL retained, but now on positive evidence rather than an absence of searching. The study characterises ethnic minority participation qualitatively as a small proportion and does not publish a percentage; no numeric breakdown appears in Verdi et al. 2019, the 2013 IJE cohort profile, the Aug 2025 policy, the Catalogue record or any site page. A number would have to come from the study team. Note the same page publishes the sex split (around 82% women), so the omission of an ethnicity figure looks deliberate rather than accidental.	Response for Percent non-whiteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Geographic coverage Recommended	national	Field-cited	Catalogue of Mental Health Measures — TwinsUK study record (record last updated 12/05/2026) https://www.cataloguementalhealth.ac.uk/TwinsUK Section: Geographic coverage “England, Scotland, Wales, Northern Ireland” Page: https://www.cataloguementalhealth.ac.uk/TwinsUK national: the Catalogue records all four UK nations and nationwide regional coverage, and the homepage describes twins from across the UK. CONFIRMED.	Response for Geographic coverageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Follow-up duration Recommended	34 years (1992-present); clinical visit waves plus questionnaires every 6-12 months	Field-cited	Data Access Policy for TwinsUK — Department of Twin Research, King's College London (August 2025) https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Section: Types of data collection “Self-administered questionnaires sent to the twin volunteers via email and post every six to twelve months” Page: https://twinsuk.ac.uk/wp-content/uploads/2025/08/DTR_DataAccessPolicy_August2025-1.pdf Value states 34 years (1992-present) plus the questionnaire cadence. The en dash in the previous value was replaced with a hyphen for consistency.	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: collection is continuous (questionnaires every 6-12 months, rolling clinic visits and postal kits), so no meaningful last-collection date exists. The most recent dated sweep found is the 2022 Longitudinal Core Questionnaire, recorded as a coverage metric instead. Left NULL.	Response for Last data collection dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment start date Recommended	1 Jan 1992	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Introduction “The registry was started in 1992” Page: https://doi.org/10.1017/thg.2019.65 1992-01-01 stored. CAVEAT: the sources give the year only; the first of January is a placeholder for an unpublished exact date. Retained from the previous pass rather than nulled, since the year itself is firmly sourced.	Response for Recruitment start dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment end date Recommended	No value held	Not published	NULL and correct: recruitment is open and ongoing, and the study states approval has been obtained to extend recruitment to under-18s.	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	Abbasian G et al. An overview of the TwinsUK cohort's anxiety and depression assessment, using the self-reported Hospital Anxiety and Depression Scale. Wellcome Open Res. 2019;4:10. https://doi.org/10.12688/wellcomeopenres.14927.1 Section: Abstract / dataset description “Overall a total of 9227 questionnaires have been completed and returned from which 5169 were returned in 2006 and 4058 in 2017.” Page: https://doi.org/10.12688/wellcomeopenres.14927.1 diagnosis_area_id 5 = Major depressive disorder. CONFIRMED as symptom-level coverage, but estimated_n was CORRECTED from 9227 to NULL. 9,227 counts QUESTIONNAIRES RETURNED, not participants (2,470 people contributed more than one time point, so the distinct-person count is materially lower and unpublished) — and completing a HADS is not having depression. The 9,227 figure is preserved as a coverage metric with unit_type=responses, which is where it belongs.	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	Davies MN et al. Generalised Anxiety Disorder - A Twin Study of Genetic Architecture, Genome-Wide Association and Differential Gene Expression. PLoS ONE. 2015;10(8):e0134865. https://doi.org/10.1371/journal.pone.0134865 Section: Abstract / Materials and Methods “Here we present a genome-wide association study of AS using a cohort of 730 MZ and DZ female twins.” Page: https://doi.org/10.1371/journal.pone.0134865 diagnosis_area_id 8 = Generalised anxiety disorder. CONFIRMED as symptom-level coverage, but estimated_n was CORRECTED from 730 to NULL. The 730 twins had ANXIETY SENSITIVITY measured by the ASI questionnaire — a personality trait the paper describes as a characteristic of GAD — not a GAD diagnosis. Reading 730 as the number of twins with generalised anxiety disorder would materially overstate the resource.	Response for Diagnosis area: Generalised anxiety disorderAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Diagnosis area: Transdiagnostic (anxiety-depression) Recommended Confirm this diagnosis area applies and estimated N if shown.	Transdiagnostic (anxiety-depression) · Transdiagnostic	Field-cited	Delanote J et al. Systematic identification of the role of gut microbiota in mental disorders: a TwinsUK cohort study. Sci Rep. 2024;14:3626. https://doi.org/10.1038/s41598-024-53929-w Section: Methods “Regarding the phenotypic variable on MD, different groups were specified according to the Hospital Anxiety and Depression (HADS) questionnaire” Page: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10864280/ NEW 2026-08-16. diagnosis_area_id 32 = Transdiagnostic (anxiety-depression), verified against db/seed/diagnosis_areas.sql. HADS scores anxiety and depression jointly, and this 2024 TwinsUK study combines HADS-derived depression with anxiety/stress and eating-disorder variables into a single mental-disorder phenotype — a transdiagnostic construct rather than a discrete diagnosis. CONSIDERED AND REJECTED: an eating-disorder area. The same paper references an eating disorder variable, but the database offers only anorexia, bulimia and binge eating disorder as separate areas, and mapping a generic self-reported flag to any one of them would invent a specificity the source does not have.	Response for Diagnosis area: Transdiagnostic (anxiety-depression)AccurateNeeds 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

Field-cited

Abbasian G et al. An overview of the TwinsUK cohort's anxiety and depression assessment, using the self-reported Hospital Anxiety and Depression Scale. Wellcome Open Res. 2019;4:10.
https://doi.org/10.12688/wellcomeopenres.14927.1
Section: Abstract / dataset description
“Overall a total of 9227 questionnaires have been completed and returned from which 5169 were returned in 2006 and 4058 in 2017.”
Page: https://doi.org/10.12688/wellcomeopenres.14927.1
diagnosis_area_id 5 = Major depressive disorder. CONFIRMED as symptom-level coverage, but estimated_n was CORRECTED from 9227 to NULL. 9,227 counts QUESTIONNAIRES RETURNED, not participants (2,470 people contributed more than one time point, so the distinct-person count is materially lower and unpublished) — and completing a HADS is not having depression. The 9,227 figure is preserved as a coverage metric with unit_type=responses, which is where it belongs.

AccurateNeeds correctionNot sureDoes not apply

Diagnosis area: Generalised anxiety disorder

Recommended

Confirm this diagnosis area applies and estimated N if shown.

Generalised anxiety disorder · Anxiety Disorders

Field-cited

Davies MN et al. Generalised Anxiety Disorder - A Twin Study of Genetic Architecture, Genome-Wide Association and Differential Gene Expression. PLoS ONE. 2015;10(8):e0134865.
https://doi.org/10.1371/journal.pone.0134865
Section: Abstract / Materials and Methods
“Here we present a genome-wide association study of AS using a cohort of 730 MZ and DZ female twins.”
Page: https://doi.org/10.1371/journal.pone.0134865
diagnosis_area_id 8 = Generalised anxiety disorder. CONFIRMED as symptom-level coverage, but estimated_n was CORRECTED from 730 to NULL. The 730 twins had ANXIETY SENSITIVITY measured by the ASI questionnaire — a personality trait the paper describes as a characteristic of GAD — not a GAD diagnosis. Reading 730 as the number of twins with generalised anxiety disorder would materially overstate the resource.

AccurateNeeds correctionNot sureDoes not apply

Diagnosis area: Transdiagnostic (anxiety-depression)

Recommended

Confirm this diagnosis area applies and estimated N if shown.

Transdiagnostic (anxiety-depression) · Transdiagnostic

Field-cited

Delanote J et al. Systematic identification of the role of gut microbiota in mental disorders: a TwinsUK cohort study. Sci Rep. 2024;14:3626.
https://doi.org/10.1038/s41598-024-53929-w
Section: Methods
“Regarding the phenotypic variable on MD, different groups were specified according to the Hospital Anxiety and Depression (HADS) questionnaire”
Page: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10864280/
NEW 2026-08-16. diagnosis_area_id 32 = Transdiagnostic (anxiety-depression), verified against db/seed/diagnosis_areas.sql. HADS scores anxiety and depression jointly, and this 2024 TwinsUK study combines HADS-derived depression with anxiety/stress and eating-disorder variables into a single mental-disorder phenotype — a transdiagnostic construct rather than a discrete diagnosis. CONSIDERED AND REJECTED: an eating-disorder area. The same paper references an eating disorder variable, but the database offers only anorexia, bulimia and binge eating disorder as separate areas, and mapping a generic self-reported flag to any one of them would invent a specificity the source does not have.

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: Institute of Psychiatry, Psychology & Neuroscience Recommended	Institute of Psychiatry, Psychology & Neuroscience · London	Field-cited	Verdi S et al. TwinsUK: The UK Adult Twin Registry Update. Twin Res Hum Genet. 2019;22(6):523-529. https://doi.org/10.1017/thg.2019.65 Section: Author affiliations “The Department of Twin Research, King's College London, St Thomas' Hospital, London, UK” Page: https://doi.org/10.1017/thg.2019.65 NEW 2026-08-16 — TwinsUK previously had no cohort_sites rows at all. Site 13 is this database's King's College London anchor. The registry is run by the Department of Twin Research & Genetic Epidemiology on the St Thomas' Hospital campus, which is a different King's department from the IoPPN, so the mapping is institutional rather than exact; see the primary_site_id row.	Response for Linked site: Institute of Psychiatry, Psychology & NeuroscienceAccurateNeeds 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	unverified	Internal	Internal catalogue field	—	—
Last verified Recommended	16 Aug 2026	Internal	Internal catalogue field	—	—
Data source Recommended	Re-verified Aug 2026 against the DTR Data Access Policy for TwinsUK (August 2025 PDF), the live twinsuk.ac.uk pages for data linkage, request access, data access costs and explore-our-data-and-samples, the twinsuk.ac.uk homepage, the Catalogue of Mental Health Measures TwinsUK record (updated 12/05/2026), Verdi et al. 2019 Twin Res Hum Genet cohort update, Abbasian et al. 2019 Wellcome Open Res HADS data note, Davies et al. 2015 PLOS ONE anxiety-sensitivity GWAS, Delanote et al. 2024 Sci Rep gut-microbiota/mental-disorders study, and mandated ISRCTN XML API and ClinicalTrials.gov API v2 searches.	Internal	Internal catalogue field	—	—