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://pubmed.ncbi.nlm.nih.gov/31062032/

Biospecimen access

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

Yes

Biospecimen access conditions

All participants consent to follow-up of their electronic health care records for up to 25 years, to storage and analysis of their DNA sample and to being contacted for further studies on the basis of their genetic data (recall-by-genotype) or health status (recallby-
phenotype).

Access to subject details

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

Yes

Description of data collection

Data is gathered through primary care records and questionnaires to participants. DNA saliva sample is also collected and stored at the NIHR Biocentre (Milton Keynes, UK)
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

Participants volunteer to participate in study cohort.

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

Death

Event triggering creation of a record in the data source

At every update to primary care electronic health care records or if additional DNA analysis are performed for a study
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

Linkage to electronic primary care records (i.e. records from the participant’s general practice)

Linkage description, possible linkage

Linkage is currently ongoing for:
• Admissions, accident and emergency attendances and outpatient appointments via HES (Hospital episode statistics)
• Pathology Data (East Midlands Pathology Service)
• Myocardial Ischaemia National Audit (MINAP)
• Eye Databases, Vital Signs, Drug Treatment and Imaging Data

Linked data source 1

Pre linked

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

No

Data source, other

Admissions, accident and emergency attendances and outpatient appointments via HES (Hospital episode statistics)

Linkage strategy

Deterministic

Linkage variable

NHS Number

Linkage completeness

100% where NHS number is known

Linked data source 2

Pre linked

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

No

Data source, other

Eye Databases, Vital Signs, Drug Treatment and Imaging Data

Linkage strategy

Deterministic

Linkage variable

NHS Number

Linkage completeness

100% where NHS number is known

Linked data source 3

Pre linked

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

No

Data source, other

Myocardial Ischaemia National Audit (MINAP)

Linkage strategy

Deterministic

Linkage variable

NHS Number

Linkage completeness

100% where NHS number is known

Linked data source 4

Pre linked

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

No

Data source, other

Pathology Data (East Midlands Pathology Service)

Linkage strategy

Deterministic

Linkage variable

NHS Number

Linkage completeness

100% where NHS number is known

Linked data source 5

Pre linked

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

Yes

Data source, other

Primary care records, participant baseline Data, Covid-19 Datasets linked in UKLLC

Linkage strategy

Deterministic

Linkage variable

NHS Number

Linkage completeness

Completeness is 100% for linkage to primary care records, where NHS number is known.
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

Not Required

Possibility of data validation

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

Yes

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?

No