Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
https://www.ukbiobank.ac.uk/learn-more-about-uk-biobank/governance

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

Yes

Biospecimen access conditions

Request to be made in the research application for approval.

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

https://www.ukbiobank.ac.uk/enable-your-research/about-our-data
Event triggering registration

Event triggering registration of a person in the data source

Other

Event triggering registration of a person in the data source, other

Patient was recruited into BioBank cohort and gave written consent

Event triggering de-registration of a person in the data source

Death
Loss to follow up
Practice deregistration

Event triggering creation of a record in the data source

Patient had contact with a GP practice and/or had a hospital admission and/or gave self reported information
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

Yes

Linkage description, pre-linked

https://biobank.ctsu.ox.ac.uk/crystal/exinfo.cgi?src=Data_providers_and_dates

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Death Data (England, Wales, Scotland)

Linkage variable

eid

Linkage completeness

https://biobank.ctsu.ox.ac.uk/crystal/exinfo.cgi?src=Data_providers_and_dates

Linked data source 2

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Hospital Inpatient Data (England, Wales, Scotland)

Linkage variable

eid

Linkage completeness

https://biobank.ctsu.ox.ac.uk/crystal/exinfo.cgi?src=Data_providers_and_dates

Linked data source 3

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Primary Care (England, Wales, Scotland)

Linkage variable

eid

Linkage completeness

https://biobank.ctsu.ox.ac.uk/crystal/exinfo.cgi?src=Data_providers_and_dates
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Waiver

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

No

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

12,00 months

Data source ETL status

Completed

Data source ETL specifications (link)