What happens to the reported data?
- Cancer registries use documents received for reporting to register personal, diagnostic and treatment data. Should new data be available, the registered information is updated.
- Personally identifiable information is verified as to its accuracy and stored separately from medical data. Date and cause of death are matched with data from other official sources (i.e. Central Compensation Office and Federal Statistical Office).
- Once a year the data is sent in anonymised form to the National Agency for Cancer Registration, and then forwarded to the Federal Statistical Office. The Federal Statistical Office, the National Agency for Cancer Registration and the Childhood Cancer Registry are responsible for cancer monitoring and health reporting, and publish the data in the form of aggregated statistics.
- Furthermore, data can, in anonymised form, be used for diagnostic and treatment quality assessment, for planning and evaluating prevention and early detection strategies, as well as for research purposes.
For which analyses is the data used?
- Data is primarily collected for the observation of trends in cancer, for elaborating prevention and early detection strategies, and for assessing the quality of care, diagnosis and treatment. Basic data are evaluated by the Federal Statistical Office in collaboration with the National Agency for Cancer Registration and the Childhood Cancer Registry. Results appear in the form of annual cancer monitoring as well as a cancer report published every 5 years. Monitoring includes the most important epidemiological indicators such as prevalence, incidence, mortality and survival rates, thereby reflecting the cancer situation nationally. The cancer report is a comprehensive document and contains more detailed information as well as explanations.
- Moreover, cantonal data can provide insights for cantonal healthcare planning.
- For questions related to public health additional data are analysed which are used for producing health reports. Additional data on cancer in adults will focus on multimorbidity in upcoming years. These data will initially need to be reported exclusively for the three most frequent locations, namely breast, prostate and bowel.
- For children and adolescents a broader range of additional data will be collected than for adults. These data serve to accurately describe the entire disease course and therapeutic interventions, including the outcomes of treatments and follow-up investigations.
Is cancer registry data also used for the purposes of research?
Data in anonymised or aggregated form can be made available to third parties for the purposes of research. Research projects are regulated by the Human Research Act and require, if data is not used in anonymised or aggregated form, informed consent from patients in addition to approval from the relevant ethics committee. Exceptionally, the relevant ethics committee can authorise transmission of non-anonymised data. Those data intended for publication must always be anonymised.