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

The collection, processing, linkage and anonymisation of the data is performed by STIZON. STIZON is an independent, ISO/IEC 27001 certified foundation, which acts as a Trusted Third Party (TTP) between the data sources and the PHARMO Institute.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Disease diagnosis
Insurance coverage start
Other

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

Start of treatment or practice registration

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

Death
Emigration
Other
Practice deregistration

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

Loss to follow-up

Event triggering creation of a record in the data source

Multiple prompts depending on healthcare setting (e.g. hospital discharge, specialist visit, medicinal product dispensing etc.)
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

STIZON links the different sources on a patient level using a combination of deterministic linkage on a unique patient identification number, when available, and probabilistic linkage on patient characteristics. Validation of the linkage against name and address information for a sample of the patients resulted in a sensitivity and specificity of 0.98. The linkage is updated on a yearly basis.

Linkage description, possible linkage

Record Linkage. General Practitioner Database, In-Patient Pharmacy Database, Clinical Laboratory Database, Hospital Database, Cancer Registry, Pathology Registry, Perinatal Registry, and others upon request.
STIZON links the different sources on a patient level using a combination of deterministic linkage on a unique patient identification number, when available, and probabilistic linkage on patient characteristics. Validation of the linkage against name and address information for a sample of the patients resulted in a sensitivity and specificity of 0.98. The linkage is updated on a yearly basis.

Linked data source 1

Pre linked

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

No

Data source, other

Any data sources have the potential to be linked.

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 2

Pre linked

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

Yes

Data source, other

Cancer Registry

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 3

Pre linked

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

Yes

Data source, other

GP Data

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 4

Pre linked

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

Yes

Data source, other

Hospital Data (includes both admissions and specialist visits)

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 5

Pre linked

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

Yes

Data source, other

In-patient Pharmacy Data

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 6

Pre linked

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

Yes

Data source, other

Mortality Registry

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 7

Pre linked

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

Yes

Data source, other

Out-patient Pharmacy Data

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 8

Pre linked

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

Yes

Data source, other

Pathology Registry

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%

Linked data source 9

Pre linked

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

Yes

Data source, other

Perinatal Registry

Linkage strategy

Other

Linkage variable

Unique patient identifier

Linkage completeness

98%
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Other

Informed consent, other

There is a committee to evaluate requests for data access

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?

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

2.2

Data source ETL frequency

6,00 months

Data source ETL status

Completed

Data source ETL specifications (link)

Data source ETL CDM version

5.4

Data source ETL frequency

12,00 months

Data source ETL status

In progress

Data source ETL specifications (link)