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).

Biospecimen access

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

No

Access to subject details

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

Yes

Description of data collection

Entries in the hospital information system
Event triggering registration

Event triggering registration of a person in the data source

Birth
Other
Practice registration

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

First visit in a univestiy clinic

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

Death
Other

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

We only know if a patient died if they die in one of Semmelweis University clinics, and for research purposes the death status could be queried from the Hungarian National Insurance Fund. We do not have otherwise de-registration.

Event triggering creation of a record in the data source

Visit in a university clinic
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, possible linkage

By the unique identifiers (Hungarian social security number), it would be possible to link the databases

Linked data source 1

Pre linked

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

No

Data source, other

National Health Insurance Fund of Hungary

Linkage strategy

Deterministic

Linkage variable

Hungarian social security number: 9 digit number

Linkage completeness

Complete
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

Required for intervention studies

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?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

6,00 months

Data source ETL status

Completed