Dutch Pregnancy Drug Register

01/02/2024
19/02/2026
Data source
Human
Other
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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://link.springer.com/article/10.1007/s40264-018-0722-7

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

The data are collected using web-based questionnaires
Event triggering registration

Event triggering registration of a person in the data source

Other

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

Once being pregnant, a woman can participate

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

Loss to follow up
Other

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

End of pregnancy or 12 months after the estimated date of birth

Event triggering creation of a record in the data source

A pregnant women registers to participate
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, possible linkage

Participants provided permission for linkages to these data sourses. Not all participants provided permission, permission can be declined

Linked data source 1

Pre linked

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

No

Data source, other

CIMS

Linkage variable

Gender, date of birth, 4 digit postal code

Linkage completeness

Unknown, a linkage should be possible but is never performed

Linked data source 2

Pre linked

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

No

Data source, other

Perined

Linkage variable

Gender, date of birth, 4 digit postal code

Linkage completeness

Unknown, a linkage should be possible but is never performed

Linked data source 3

Pre linked

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

No

Data source, other

Praeventis

Linkage variable

Gender, date of birth, 4 digit postal code

Linkage completeness

Unknown, a linkage should be possible but is never performed
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Not Required

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?

No

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

No

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