The Cancer Registry at the National Board of Health and Welfare

The National Cancer Register is a health data register at the National Board of Health and Welfare. The purpose is to map the incidence of cancer and changes over time. Approximately 60 000 malignant cases of cancer is registered every year in Sweden.

Since the mid-80’s there are six regional registries associated with the oncological centres, nowadays RCC, 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.

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.

The cancer registry is an important source for statistics, for planning and enables international comparisons. The information in the register is also used for research. The data in the cancer register can be used to answer, for example:

  • What does the development look like in terms of the number of new cases?
  • Are there any regional or demographic differences?
  • What is the probability of survival in different cancers?

Who has an obligation to provide information?

Everyone who conducts activities in healthcare, which includes regions, municipalities and private healthcare providers, must report reportable tumors to the cancer registry according to current regulations. It is the care provider who must ensure that there are good routines for this.

What should be reported?

Data must be reported on tumors and tumor-like conditions diagnosed in the health care through:

  1. clinical diagnostics, including radiological and other imaging examinations,
  2. morphological diagnostics or other laboratory examination, and
  3. clinical autopsy.

Despite the register's name, not only malignant tumor diseases are covered, but also certain conditions that are benign, premalignant or have unclear malignancy potential. Strong suspicion of malignant tumor must also be reported.

Cancer notification

Notification must be made both by the unit responsible for the care and by the unit that morphologically or by other laboratory examination established a reportable diagnosis. Registration from the clinic can be done electronically via the quality registers available at INCA.

For those diagnoses that are not covered by a quality register, cancer reporting can be done electronically via a form in INCA or via the National Board of Health and Welfare's form for Cancer reporting. Cancer notification from laboratory operations is usually done by electronic transmission of diagnostic statements from the lab system.