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Evolving laws and consent requirements. Long-term cohort studies often encounter changes in laws and regulations over time, including evolving IC requirements. Consider how earlier IC agreements may differ from current standards, such as permissions for sharing data outside the EU.
Participant dropouts. Account for participants who drop out between measurement rounds. For example, if a participant last contributed 10 years ago, their original IC remains valid, which can create complexities.
Transition to adulthood in birth cohorts. For birth cohorts, consider how IC changes when children reach adulthood. While parents initially provide consent, adults may decide to withdraw or modify the use of their previously collected data.
Future data retrieval and linkage. Plan for potential future data uses, such as retrieving cause-of-death information from CBS or updating addresses through the BRP. Ensure IC explicitly addresses these possibilities.
Is hier een voorbeeld van wat je dan moet toevoegen aan je SIS/ICF?
Misschien moet dit wel naar step 3, omdat het principe ook toepasbaar is op niet-cohort studies
Retention period for data. Clearly define the data retention period in IC materialsthe SIS/ICF. Specify whether the 15-year period (or similar) begins after the study concludes to avoid premature data deletion. Alternatively, consider specifying periodic evaluations of data retention (e.g., every 5 years) with participant notification.
Is hier een voorbeeld van wat je dan moet toevoegen aan je SIS/ICF?
Misschien moet dit wel naar step 3, omdat het principe ook toepasbaar is op niet-cohort studies
Geldt dit niet ook voor biomateriaal?
Always consult your data protection officer for guidance.
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