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

Some centers store the material in biobanks and if necessary it can be reused on request.

Access to subject details

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

Yes

Description of data collection

Data holders: Czech Pneumological and Phthiseological Society, Czech Medical Association of J. E. Purkyně.
Most data is extracted and processed from Electronic Health Record Systems (EHRS) using the technology developed by OAKS.
The CLADE-IS web application https://lucas.data-warehouse.zone is used for manual data entry.
Data from EHRS and CLADE-IS are then compiled into the source file to the AWS S3 bucket, which is then imported into the OAKS database (PostgreSQL).
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

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

Other

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

The subject is discharged from an specialist outpatient clinic or reject consent.

Event triggering creation of a record in the data source

Confirmed diagnosis of ICD-10 C34
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

Linked data source 1

Pre linked

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

Yes

Data source, other

other

Linkage strategy

Deterministic

Linkage variable

LUCAS-ID unique identifier for linking data sources.

Linkage completeness

Our process ensure, that the combined data provides a complete and consistent representation of the information. Different data sources have been accurately connected, resulting in a reliable and consistent integrated dataset.
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Required for general use

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

1,00 month

Data source ETL status

Completed