14 October 2016

Guidance on the disclosure of Quality Registry data for research

This guidance is intended for researchers who would like to use quality registry data in their research and for registrars and registry organizations for the National Quality Registries.

The guidance does not in itself comprise new rules, but instead aims to provide information on applicable laws, and practical guidance on how to relate to these laws.

In the event the relevant authority responsible for personal data (CPUA) for a quality registry has developed its own guidelines and application forms, these should of course be consulted and used if possible.

The regional registry centres and regional cancer centres behind the guidance have been tasked with assisting and supporting the National Quality Registry, and with promoting high-quality and value-creating research on quality registries for the benefit of the population. The guidance in this version has been confined to the research conducted in Sweden.

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