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://dre.pt/dre/detalhe/lei/53-2017-107692693

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?

No

Description of data collection

Every hospital registers new cases of cancer in a national common plataform. The access to the information for registration is enabled by EMR and automatic integration of health systems.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Start of treatment

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

Other

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

Formal request by the patient to be excluded from the database.

Event triggering creation of a record in the data source

The data source provides a trigger for follow-up update of the cancer registry but only inside the database. Other data sources can be triggers (e.g. SICO-Death Certificate Information System, SIGLIC- Integrated Surgical Enrollment Management System, SIMH - Information System for Hospital Morbidity). No data is released or triggers other systems.
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?

No
Data management specifications that apply for the data source

Informed consent for use of data for research

Required for all 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?

No