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://cpisanidadcm.org/infobanco/?lang=en

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

The sources of information are the Electronic Health Records of both the Hospital and Primary Care, so that any patient contact with the health centres implies a record of data by health professionals. The data and the systems in which they are made will vary according to the type of visit required by the patient.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Start of treatment

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

Death

Event triggering creation of a record in the data source

Any patient contact with the Hospital or Primary Care.
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 combination of information is done at the patient level, by means of a unique identifier of the residents in Madrid Region.

Linked data source 1

Pre linked

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

Yes

Data source, other

It is combined the information from the Hospital and Primary Care, so as to have information on all the events that occurred throughtout the patient's life.

Linkage variable

The variable that allows the unique identification of patients treated in Madrid Region is called CIPA.

Linkage completeness

All patients
Data management specifications that apply for the data source

Data source refresh

Monthly

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

CDM name (other)

OpenEHR

Data source ETL frequency

0,03 months

Data source ETL status

In progress

Data source ETL frequency

0,03 months

Data source ETL status

Completed

Data source ETL CDM version

5.3

Data source ETL frequency

0,03 months

Data source ETL status

In progress