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://genomics.ut.ee/en/content/estonian-biobank

Biospecimen access

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

Yes

Biospecimen access conditions

A four step process. 1) Preliminary inquiry; 2) Application to Estonian Biobank Scientific committee; 3) Application to the Estonian Committee on Bioethics and Human Research 4) Application for the issuance of data or biosamples or both from the EBB

Access to subject details

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

Yes

Description of data collection

The donors fill out a survey upon joiing the biobank. Subsequently their medical data dating back to 2004 is loaded from national sources (claims, discharge reports, prescriptions and registries). The healthcare data is updated each year.
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

Application to join Estonian Biobank

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

Other

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

Application to leave Estonian Biobank

Event triggering creation of a record in the data source

Initially joining the biobank. Subsequently the health data is being kept up to date.
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 is done using unique personal identification code which is unique to all Estonian residents

Linked data source 1

Pre linked

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

No

Data source, other

All the data sources that can be linked to are already included.

Linked data source 2

Pre linked

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

Yes

Data source, other

Cancer registry information

Linkage variable

Unique personal identification code

Linkage completeness

Every inhabitant of Estonia has the personal identification code that can link all their data from different data sources.

Linked data source 3

Pre linked

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

Yes

Data source, other

Death registry information

Linkage variable

Unique personal identification code

Linkage completeness

Every inhabitant of Estonia has the personal identification code that can link all their data from different data sources.

Linked data source 4

Pre linked

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

Yes

Data source, other

Digital prescription data

Linkage variable

Unique personal identification code

Linkage completeness

Every inhabitant of Estonia has the personal identification code that can link all their data from different data sources.

Linked data source 5

Pre linked

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

Yes

Data source, other

Discharge summaries

Linkage variable

Unique personal identification code

Linkage completeness

Every inhabitant of Estonia has the personal identification code that can link all their data from different data sources.

Linked data source 6

Pre linked

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

Yes

Data source, other

Insurance claims data

Linkage variable

Unique personal identification code

Linkage completeness

Every inhabitant of Estonia has the personal identification code that can link all their data from different data sources.
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Other

Informed consent, other

All donors have signed a broad informed consent upon joining the Biobank.

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