14 October 2016

Collecting additional information from the registered individuals

Sometimes additional information needs to be collected for a study. For additional information to be collected from the individuals registered in the registry, the research topic must be significant and urgent.

Approval by the Ethical Review Board is also necessary. Each individual person in the registry must be consulted and give their consent for this additional data collection. This situation is easier to handle if the patients have been informed that they may be contacted for additional information when they are informed of the registration, and notified that this data may be used for research purposes.

If this is included in the description of the study that has been approved by the Ethical Review Board, there is no legal obstacle to contacting the patients to compile supplementary information/material for the study. The registry centres and regional cancer centres recommend that all quality registries notify the patients at registration that additional data may need to be collected.

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