As registry centers, the country's six regional cancer centers have joint responsibility for national quality registries in the field of cancer. The register center's mission includes supporting the development of quality registers and actively promoting research with the support of quality registers.
Doing research with registry data
If you want to use data from the diagnosis-specific quality registers, you first need to contact the register group, to investigate whether the project's questions can be answered based on the data available in the register or if the current question has already been clarified or is under analysis.
In order to conduct research based on information in national quality registers or the cancer register, your project must be approved by the Swedish Ethical Review Authority. When you have finished the dialogue with the register group and have an approved ethics review, you submit the application for data extraction to the RCC.
Things to consider before ordering data
- Evaluate the feasibility of the project.
- Access register-specific documentation via cancercentrum.se.
- Think through and formulate your research question as precisely as possible.
- If your research question is limited, consider the possibility of obtaining results directly from the registers, produced by RCC's statisticians.
Data extraction from registers
You apply for data extraction from the quality registers and from the Cancer Register via standardized forms.