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

Biospecimens can be accessed under the signture of a protocol approved by IPO-Porto internal review board.

Access to subject details

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

No

Description of data collection

The database is updated in real-time via FHIR messages, integrating information from several IPO-Porto databases. However, this data needs to be manually curated by data managers. So, we only have validated information up to 2020, which is the information we make available.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Practice registration
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

Patients may request to be de-registered from the IPO-Porto cancer registry

Event triggering creation of a record in the data source

A record is created in real-time via FHIR message at the first contact of a patient with administrative service.
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 database is updated in real-time integrating information from several IPO-Porto databases.

Linkage description, possible linkage

A process of linking databases real-time will be established soon.

Linked data source 1

Pre linked

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

Yes

Data source, other

Outpatient electronic health records; Inpatient hospital electronic health records; Inpatient hospital billing systems; Biobank

Linkage variable

All data sources are linked by an internal IPO-Porto patient number.

Linked data source 2

Pre linked

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

No

Data source, other

Portuguese National Cancer Registry

Linkage variable

Data sources are linked by a unique cancer identification number
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Other

Informed consent, other

Waiver to informed consent can be requested to conduct non-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
Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No