Cancer registration in the Nordic countries
Each of the Nordic countries has a population-based cancer registry. The Danish Registry is the oldest, having been founded in 1942. The Norwegian, Finnish and Icelandic registries were founded in 1952–1954 and the Swedish Registry in 1958.
The financial basis for each of the registries, except for that of Sweden, was originally provided by the cancer society in the respective country. The registries in Finland and Iceland are now run by the cancer societies with support from governmental funds, while the Danish (since 1997), Norwegian (since 1979) and Swedish registries are administered by the state.
The Nordic cancer registries collaborate closely, and annual meetings are held to discuss standardization of registration and classification and to plan joint projects. A survey comparing the coding practices used in the Nordic countries (survey of the Nordic cancer registries ANCR 2001) concluded that there are only minor differences between the countries, and that their data can safely be used in descriptive comparative studies.
Notification is compulsory in all of the Nordic countries. Reporting became compulsory for private physicians in Sweden in 1983 and for all medical doctors in Denmark in 1987 and Iceland in 2007. Almost 100% coverage of incident cases is achieved in all of the registries, which rely on reporting from multiple sources, including physicians, hospitals, institutions with hospital beds, and pathological and cytological laboratories. Information is also collected from death certificates, except in Sweden.
In all of the Nordic countries, each inhabitant has a unique personal identification number, which makes identification simple and reliable. The registries collect a minimal set of data on each cancer patient, which is used for routine statistical reporting. The data are collected in different forms in the five countries, but the following items are registered for each cancer case in each registry: patient identification, place of residence, primary site of the tumour, date of diagnosis, verification of diagnosis, histological type and date and cause of death.
Apart from routine production of statistics, the Finnish, Icelandic, Norwegian and Swedish registries employ research staff, who work mainly in the fields of epidemiology, clinical pathology, public health and biometry. The research staff at the registries also assist other scientists who wish to use registry data for their own projects. In Denmark, the corresponding research is conducted by scientists employed by the Danish Cancer Society. The national Swedish Cancer Registry has overall responsibility for combining and reporting all cancer cases registered in Sweden by six regional cancer registries. The regional registries are situated at the major oncological centres and are responsible for collecting and coding the Swedish data. In the other countries, the collection and coding is centralized.
The above text is from the following publication by Møller B et al.: Prediction of cancer incidence in the Nordic countries up to the year 2020. Eur J Cancer Prev. 2002 Jun;11 Suppl 1:S1-96. Review.