Cohort validation pack

Autistica Research Cohorts

Autistica Research Network Cohorts

Generated 6 Oct 2026, 10:35 · ID 63

Unverified

Last verified: 16/04/2026

Instructions for reviewers

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

Overview

Total fields

Field-cited

Whole-record source only

AI-inferred, no source yet

Searched — not published

No value held

Needs review

Source coverage

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

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Field-level source coverage Optional	32 of 67 reviewable fields are cited to a source (48%) · 8 with no source yet · 27 searched — not published · 34 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	Autistica Research Cohorts	Field-cited	Autistica — Official Website https://www.autistica.org.uk/ Section: Home <title> “Home \| Autistica \| Autism research and campaigning \| Autistica” Page: https://www.autistica.org.uk/	Response for Short nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Full name Required	Autistica Research Network Cohorts	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us standfirst “leading autism research and campaigning charity” Page: https://www.autistica.org.uk/about-us/about-us full_name is a DIGIT display label for the charity-led research portfolio (Autistica Research Network Cohorts), not a separate Companies House name; substring quoted from standfirst to avoid apostrophe encoding ambiguity.	Response for Full nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Managing organisation Recommended	Autistica	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Charity overview “AUTISTICA” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print	Response for Managing organisationAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Primary site Recommended	No value held	Not published	primary_site_id=NULL: Autistica is modelled as a UK charity-led umbrella without a single mapped recruiting site in the DIGIT sites table.	Response for Primary siteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Website URL Recommended	https://www.autistica.org.uk/	Field-cited	Autistica — Official Website https://www.autistica.org.uk/ Section: Canonical “https://www.autistica.org.uk/” Page: https://www.autistica.org.uk/	Response for Website URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Catalogue of Mental Health Measures URL Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Catalogue of Mental Health Measures URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact name Recommended	No value held	Not published	Searched — not published UNSOURCEABLE in this seed pass: public contact routes exist but not copied into contact_name.	Response for Contact nameAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Contact email Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: not populated from public pages in this verification pass.	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	Autistica is the UK's leading autism research and campaigning charity. DIGIT models it as an umbrella for charity-led and partner autism studies: the Autistica Network connects autistic people, families, researchers and professionals to research opportunities (including surveys and partner-led studies), with mental health improvement embedded in charitable objects and research priorities.	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us Combined with Autistica Network page on surveys/partner studies to describe umbrella research portfolio.	Response for DescriptionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N Required	No value held	Not published	Searched — not published UNSOURCEABLE: No public single cumulative enrolled-N for the whole Autistica portfolio (Network + multiple partner studies). Searched: Charity Commission activities narrative, autistica.org.uk Network pages (no aggregate counter). Removed prior approximate 10,000 figure.	Response for Total NAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Total N qualifier Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: total_n is NULL; no qualifier applies.	Response for Total N qualifierAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Year established Recommended	2004	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Registration history “20 December 2004: Standard registration” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print year_established uses calendar year of charity standard registration (2004).	Response for Year establishedAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Active cohort Recommended	Yes	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Charity overview “Charity reporting is up to date (on time)” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Interpreted as organisation still operating and reporting; website updated 2026.	Response for Active cohortAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ongoing recruitment Recommended	Yes	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: The Autistica Network “Makes it easy to take part in research.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research	Response for Ongoing recruitmentAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Refreshed cohort Recommended	No	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: DIGIT cohort definition “Members are sent newsletters, updates and research opportunities by email.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research is_refreshed=FALSE: entity is not a single longitudinal cohort with defined repeat-assessment waves; it is a national network and charity portfolio.	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 published recontact response rate for the Network.	Response for Recontact success rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Retention rate Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No single portfolio retention statistic published.	Response for Retention rateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Published references Recommended	No value held	Not published	Searched — not published UNSOURCEABLE as array: No single canonical cohort profile DOI for the umbrella charity portfolio. Searched: Google Scholar for Autistica cohort profile (no dedicated profile paper for the umbrella entity in this pass).	Response for Published referencesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Notes Recommended	DIGIT entry represents Autistica as a Group 2 research participation and partnership portfolio (not a single harmonised study with one cumulative N). Comorbid anxiety/depression themes appear across Autistica content but are not modelled as separate diagnosis_area rows to avoid double-counting this umbrella entity.	Field-cited	Autistica — Official Website https://www.autistica.org.uk/ Section: Meta description “Autistica is the UK's leading autism research and campaigning charity.” Page: https://www.autistica.org.uk/ notes expands DIGIT modelling choices (see cohort row notes column). Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: DIGIT modelling “Focuses on research about what matters to autistic people.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research notes explain why comorbid MH diagnosis areas are not duplicated for this umbrella entity.	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	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: If you want to take part in a study “If we email you about a study and you'd like to get involved, you can respond to the research team directly.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research Decision tree: identifiable contact for opportunities YES; not S251 NHS record access; recontact/email pathway YES; no blanket pre-consent to randomised interventional trials at umbrella level -> Level 3.	Response for Consent level (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Characterisation depth (axis) Required	2 — Standardised MH instruments	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Examples of available opportunities “It could be as simple as taking a survey.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research Umbrella portfolio emphasises surveys and partner-led studies; not a single research-grade diagnostic interview programme for all members -> Level 2.	Response for Characterisation depth (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data availability (axis) Required	2 — Records + research data	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Survey example “taking a survey” Page: https://www.autistica.org.uk/get-involved/take-part-in-research DERIVED: has_questionnaire_data=TRUE; all biological/advanced flags FALSE -> hasResearch=TRUE -> data_availability=2.	Response for Data availability (axis)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cohort map group (derived) Recommended	Group 3	Internal	Internal catalogue field	—	—
Population type Recommended	Network / umbrella	Not published	DIGIT Cohort Portfolio Review — population type and engagement classification (Aug 2026) Classified network_umbrella in the DIGIT cohort portfolio review (Aug 2026). Charity umbrella for autism research networks and partner studies — a recruitment channel, not a single cohort.	Response for Population typeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Industry engagement status Recommended	Unknown	Not published	Searched — not published UNSOURCEABLE: industry engagement status is an organisational property of the custodian and is not publicly documented; default 'unknown' pending a cohort-owner meeting.	Response for Industry engagement statusAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Parent cohort / programme Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Parent cohort / programmeAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TWiCs eligible Recommended	No	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Ethical research that is appropriate for you “You will always be fully informed about a research project before you decide to take part” Page: https://www.autistica.org.uk/get-involved/take-part-in-research FALSE: consent_level is not 4; umbrella does not pre-consent all members to TWiCs-style interventional trials.	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	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Examples of available opportunities “It could be as simple as taking a survey.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research	Response for Questionnaire / interviewAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Cognitive testing Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: DIGIT entity is not described as holding a harmonised cognitive test battery archive across all projects.	Response for Cognitive testingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Physical measures Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Developing new therapies” Page: https://www.autistica.org.uk/about-us/about-us FALSE: no programme-wide objective physical phenotyping archive described for this umbrella entity.	Response for Physical measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosamples Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: charity umbrella is not described as operating a central biobank for this DIGIT cohort record.	Response for BiosamplesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genomic data Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: no cohort-wide genomics archive stated for this umbrella entity.	Response for Genomic dataAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Omics Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: no programme-wide omics data layer described for this resource record.	Response for OmicsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: no imaging archive described for the umbrella entity.	Response for ImagingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Wearable / sensor Recommended	No	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us FALSE: no wearable sensor archive described for this entity.	Response for Wearable / sensorAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Digital phenotyping Recommended	No	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Examples of available opportunities “trialling a new therapy or mobile app” Page: https://www.autistica.org.uk/get-involved/take-part-in-research FALSE for portfolio entity: some projects may use apps, but no passive digital phenotyping data stream is described as a harmonised cohort-wide modality.	Response for Digital phenotypingAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Linked health records Recommended	No	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Charitable objects (excerpt) “TO ADVANCE EDUCATION IN THE FIELD OF AUTISM” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print FALSE: Autistica-as-cohort is not an NHS-linked research archive; individual partner studies may link separately.	Response for Linked health recordsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Biosample types Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: NULL aligns with has_biosamples=FALSE.	Response for Biosample typesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Genotyping platform Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: NULL aligns with has_genomic_data=FALSE.	Response for Genotyping platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Imaging modalities Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: NULL aligns with has_imaging_data=FALSE.	Response for Imaging modalitiesAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Mental health measures Recommended	No value held	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Charitable objects (excerpt) “IMPROVE PHYSICAL AND MENTAL HEALTH AMONG AUTISTIC PEOPLE AND THEIR FAMILIES” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print mental_health_measures left NULL: objects affirm mental health as a research theme; instruments vary by study.	Response for Mental health measuresAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Data subcategories

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

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

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Data subcategories

Recommended

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

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Consent and use permissions

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

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

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Consent and use permissions

Recommended

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

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Access pathways

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

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

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Access pathways

Recommended

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

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Within-cohort coverage

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

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

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Within-cohort coverage metrics

Recommended

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

No value held

No source yet

No citation linked to this field yet.

AccurateNeeds correctionNot sureDoes not apply

Linkage and access

Field	Current value	Evidence	Source evidence	Response	Notes / correction
NHS linkage Recommended	No	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Objects (charity) “TO ADVANCE EDUCATION IN THE FIELD OF AUTISM” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print FALSE: umbrella entity is not an NHS-linked research dataset.	Response for NHS linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
GP linkage Recommended	No	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Objects (charity) “TO ADVANCE EDUCATION IN THE FIELD OF AUTISM” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print FALSE: not a GP-linked cohort archive entity.	Response for GP linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Death registry linkage Recommended	No	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Objects (charity) “TO ADVANCE EDUCATION IN THE FIELD OF AUTISM” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print FALSE: not described as a mortality-linked resource.	Response for Death registry linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Education linkage Recommended	No	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Objects (charity) “TO ADVANCE EDUCATION IN THE FIELD OF AUTISM” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print FALSE: education administrative linkage not stated for this umbrella cohort record.	Response for Education linkageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access mechanism Recommended	collaboration	Field-cited	Autistica — About us https://www.autistica.org.uk/about-us/about-us Section: About us “Delivering and partnering on research across the UK” Page: https://www.autistica.org.uk/about-us/about-us collaboration: research access is via partnering with Autistica and individual study teams rather than one open cohort download.	Response for Data access mechanismAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
TRE platform Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No TRE named for a unified Autistica archive in this record.	Response for TRE platformAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data dictionary URL Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No single public data dictionary URL for the umbrella portfolio.	Response for Data dictionary URLAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access timeline (days) Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No single data-access timeline for the umbrella portfolio.	Response for Data access timeline (days)AccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Data access cost Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No standardised public cost schedule for Autistica-as-cohort.	Response for Data access costAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Participant profile and dates

Field	Current value	Evidence	Source evidence	Response	Notes / correction
Age distribution Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public aggregate age distribution for the umbrella portfolio.	Response for Age distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Sex distribution Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public aggregate sex distribution for the umbrella portfolio.	Response for Sex distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Ethnicity distribution Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public aggregate ethnicity distribution for the umbrella portfolio.	Response for Ethnicity distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Smoking status distribution Recommended	No value held	No source yet	No citation linked to this field yet.	Response for Smoking status distributionAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Median age Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public median age for the umbrella portfolio.	Response for Median ageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent female Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public sex split for the umbrella portfolio.	Response for Percent femaleAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Percent non-white Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: No public ethnicity split for the umbrella portfolio.	Response for Percent non-whiteAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Geographic coverage Recommended	national	Field-cited	Charity Commission — AUTISTICA (1107350) full print https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print Section: Where the charity operates “Throughout England And Wales” Page: https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4009904/full-print geographic_coverage=national: England and Wales coverage matches data-dictionary national definition for UK constituent-nation scope.	Response for Geographic coverageAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Follow-up duration Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: Portfolio has heterogeneous study durations.	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: No single last collection date for the umbrella portfolio.	Response for Last data collection dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment start date Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: Not a single-cohort recruitment window; charity registration year captured in year_established only.	Response for Recruitment start dateAccurateNeeds correctionNot sureDoes not apply No response selected	No notes
Recruitment end date Recommended	No value held	Not published	Searched — not published UNSOURCEABLE: Ongoing Network and study opportunities.	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: Autism spectrum conditions Recommended Confirm this diagnosis area applies and estimated N if shown.	Autism spectrum conditions · Neurodevelopmental	Field-cited	Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: DIGIT join row “Autistic people, family members or carers of autistic people” Page: https://www.autistica.org.uk/get-involved/take-part-in-research estimated_n=NULL: no public stratified N for autism-spectrum participants distinct from carers in the umbrella portfolio. Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: DIGIT modelling “Focuses on research about what matters to autistic people.” Page: https://www.autistica.org.uk/get-involved/take-part-in-research notes explain why comorbid MH diagnosis areas are not duplicated for this umbrella entity. Autistica — Take part in research (Autistica Network) https://www.autistica.org.uk/get-involved/take-part-in-research Section: Who could join the Autistica Network “Autistic people, family members or carers of autistic people” Page: https://www.autistica.org.uk/get-involved/take-part-in-research diagnosis_area_id=17 (Autism spectrum conditions) matches Network eligibility focused on autism; estimated_n=NULL with cohort total_n NULL.	Response for Diagnosis area: Autism spectrum conditionsAccurateNeeds correctionNot sureDoes not apply No response selected	No notes

Field

Current value

Evidence

Source evidence

Response

Notes / correction

Diagnosis area: Autism spectrum conditions

Recommended

Confirm this diagnosis area applies and estimated N if shown.

Autism spectrum conditions · Neurodevelopmental

Field-cited

Autistica — Take part in research (Autistica Network)
https://www.autistica.org.uk/get-involved/take-part-in-research
Section: DIGIT join row
“Autistic people, family members or carers of autistic people”
Page: https://www.autistica.org.uk/get-involved/take-part-in-research
estimated_n=NULL: no public stratified N for autism-spectrum participants distinct from carers in the umbrella portfolio.
Autistica — Take part in research (Autistica Network)
https://www.autistica.org.uk/get-involved/take-part-in-research
Section: DIGIT modelling
“Focuses on research about what matters to autistic people.”
Page: https://www.autistica.org.uk/get-involved/take-part-in-research
notes explain why comorbid MH diagnosis areas are not duplicated for this umbrella entity.
Autistica — Take part in research (Autistica Network)
https://www.autistica.org.uk/get-involved/take-part-in-research
Section: Who could join the Autistica Network
“Autistic people, family members or carers of autistic people”
Page: https://www.autistica.org.uk/get-involved/take-part-in-research
diagnosis_area_id=17 (Autism spectrum conditions) matches Network eligibility focused on autism; estimated_n=NULL with cohort total_n NULL.

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 sites Optional	No value held	No source yet	No citation linked to this field yet.	Response for Linked sitesAccurateNeeds 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 Apr 2026	Internal	Internal catalogue field	—	—
Data source Recommended	Verified Apr 2026 from autistica.org.uk (home, About us, Take part in research / Autistica Network), Charity Commission for England and Wales charity 1107350 full print, docs/data-population-plan.md §3.3 (Group 2 list). Searched: Google Scholar for a single cohort profile paper for this umbrella (no dedicated profile located). HDR UK Gateway / ClinicalTrials.gov not used as primary evidence for aggregate cohort metrics (no single dataset record).	Internal	Internal catalogue field	—	—