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)?

Yes

Biospecimen access conditions

Upon informed consent request and approval by the ULSCB Ethics Committee

Access to subject details

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

Yes

Description of data collection

This is EHR data that is created by all healthcare professionals at ULSCB during regular care and for healthcare purpose. Data is created by doctors, nurses and other professionals. Most EHR systems are oficial public national software (SONHO, SINUS) with additional EHR systems coming from third party vendors. The totality of data recorded within ULSCB EHR systems is available for research purposes.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Immigration
Practice registration

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

Death

Event triggering creation of a record in the data source

Provision of care, for the first time, inside the hospital or primary care center. The record is created by the administrative support staff when the patient does the check-in.
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

Patient code is unique and created on birth, practice registration or immigration. Codes are non overlapping and there guaranteed to be unique.

Linkage description, possible linkage

Patient code is unique and created on birth, practice registration or immigration. Codes are non overlapping and there guaranteed to be unique.

Linked data source 1

Pre linked

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

No

Data source, other

National Death Registry

Linkage variable

COD_UTENTE

Linkage completeness

100%

Linked data source 2

Pre linked

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

No

Data source, other

National Drug Prescription and Dispensation Registry

Linkage variable

COD_UTENTE

Linkage completeness

100%

Linked data source 3

Pre linked

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

No

Data source, other

National Vaccination Registry

Linkage variable

COD_UTENTE

Linkage completeness

100%

Linked data source 4

Pre linked

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

No

Data source, other

Other quality registries

Linkage variable

COD_UTENTE

Linkage completeness

100%

Linked data source 5

Pre linked

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

Yes

Data source, other

The totality of data is automatically linked by default because all EHR systems use the same national patient code to register patient data.

Linkage variable

COD_UTENTE

Linkage completeness

100% in ULSCB, and can be used to cross agains the totality of national healthcare information available
Data management specifications that apply for the data source

Data source refresh

Monthly

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?

No

Data source preservation length

50 years

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

1,00 month

Data source ETL status

Planned