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).
Code of Good Governance

Biospecimen access

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

Yes

Biospecimen access conditions

Informed consent is needed to access biospecimen information.

Access to subject details

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

Yes

Description of data collection

All data information is collected and recorded using the hospital electronic health records system during medical consultations, lab tests, procedures, admissions, treatments, surgery and all the clinical events.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Practice registration
Start of treatment

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

Death
Loss to follow up

Event triggering creation of a record in the data source

The creation of a record in the data source is typically triggered by events related to patient care and hospital operations. For example, when a patient is registered, a new record is generated to capture personal and medical information. Similarly, clinical encounters, such as consultations, examinations, or treatments, lead to the creation of additional records documenting observations, diagnoses, and prescribed therapies.
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

The Spanish National Mortality Registry, the Cancer Registry, hospital outpatients' prescriptions, primary care prescriptions and diagnostics (partially), and all types of vaccinations received are included.

Linkage description, possible linkage

Linkage is possible using the health identification code (CIP) used in Catalonia.

Linked data source 1

Pre linked

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

Yes

Data source, other

Prescriptions and diagnoses in outpatient settings.

Linkage strategy

Deterministic

Linkage variable

Patient ID (CIP: health identification code)

Linkage completeness

For instance, in vaccines it's 100%, prescriptions and diagnoses in primary care it's about 30%.

Linked data source 2

Pre linked

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

Yes

Data source, other

Tumour Registry that includes additional information regarding treatments, stage or other relevant information related to cancer conditions.

Linkage strategy

Deterministic

Linkage variable

Patient ID

Linkage completeness

80-85% of cancers.
Data management specifications that apply for the data source

Data source refresh

Quarterly

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

4,00 months

Data source ETL status

Completed