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).
Lifelines website
Lifelines Wiki

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

Yes

Biospecimen access conditions

Whole blood, plasma, serum, urine, feces, DNA, buffy coats and hair.

Access to subject details

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

Yes

Description of data collection

Lifelines collects questionnaire data, measurements, and biological samples from the entire cohort in rounds or waves called general assessments. On top of the general assessments, additional assessments may be performed in selected groups of Lifelines participants (e.g. “subcohorts”) in order to collect additional questionnaire data, measurements and/or biomaterials. Additional assessments are performed at the initiative of (and in collaboration with) external research groups, and an embargo period for use of additional data by third parties may apply.
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
End of treatment
Loss to follow up
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

Gecco data, place of birth and some other CBS data (CBS data), air pollution, ELAPSE.

Linkage description, possible linkage

IKNL
IADB
CBS
Palga
Perined
Nivel
and other requests may be possible
Data management specifications that apply for the data source

Data source refresh

Quarterly

Informed consent for use of data for research

Other

Informed consent, other

Participants signed a broad consent for data usage for research purposes in the field of healthy ageing.
The general Lifelines protocol has been approved by the UMCG Medical ethical committee under number 2007/152.

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?

No