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)?

No

Access to subject details

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

Yes

Description of data collection

Clinical practice data are collected and recorded in real time in EHR. The ETL procedure developed for the EHDEN project is performed weekly.
Event triggering registration

Event triggering registration of a person in the data source

Practice registration

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

Other

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

Patient request

Event triggering creation of a record in the data source

Inpatient visit, outpatient visit, laboratory measurement, diagnostic test, biobank specimen
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

Unique patient ID can collect data about inpatient and outpatient visit, diagnosis, procedures, devices, lab measurement, cardiological ultrasound test, biobank specimen, pathological anatomy report

Linkage description, possible linkage

We plan to capture drug information (active principle, dosage, route of administration, time of administration) starting on 2024.

Linked data source 1

Pre linked

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

Yes

Data source, other

Currently our data source gathers data from four different internal EHR sources.

Linkage strategy

Deterministic

Linkage variable

Unique patient ID

Linkage completeness

Completed

Linked data source 2

Pre linked

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

No

Data source, other

EHR Drug administration module

Linkage variable

Unique patient ID, Inpatient visit ID

Linkage completeness

The linkage to this drug source data is planned for 2024
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

0,25 months

Data source ETL status

Completed