It is compulsory for every health care provider to report newly detected cancer cases to the registry. A report has to be sent for every cancer case diagnosed at clinical-, morphological-, other laboratory examinations as well as cases diagnosed at autopsy.
Since the mid-80’s there are six regional registries associated with the oncological centres in each medical region of Sweden where the registration, coding and major check-up and correction work is performed. The regionalization implies a close contact between the registry and the reporting physician, which in turn simplifies the task of correcting and checking the material.
There are three different types of information:
The regional registries send information about newly registered cases and correction concerning those previously reported to the National Cancer Register on an annual basis.
The material passes through the following controls:
A quality study of the cancer register was published in Acta Oncologica in 2008 (The completeness of the Swedish Cancer Register – a sample survey for year 1998 by Barlow et al) where the coverage rate was evaluated in comparison to the inpatient registry. The underreporting was then estimated to approximately 4 percent.
An estimation of the underreporting of cancers can also be done by comparing the Cancer Register data with the Cause of Death Register, since the Swedish Cancer Register does not accept notifications from death certificates. This shows that underreporting is highly dependent on the cancer site; for example breast cancer has very low underreporting while there are a larger number of pancreatic and lung cancer not reported to the cancer registry.
If you have questions about the Swedish Cancer Register, you can contact us at firstname.lastname@example.org.