ANCR - Association of Nordic Cancer Registries

The Association of Nordic Cancer Registries (ANCR) is the cooperative organ for the national registries of Denmark (inclusive Faroe Islands and Greenland), Iceland, Finland, Norway and Sweden.

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The object of the Association is to provide a continuing, organized framework for the activities of the Nordic cancer registries to facilitate exchange of both scientific and technical information, to contribute to the uniformity of definitions used by the registries, and to facilitate the organisation of inter-Nordic studies and studies proposed by international organisations and various groups of individuals.

ANCR Board meetings are held twice a year. In connection with the fall meeting, ANCR holds a symposium which the individual countries take shifts in arranging.

History of the ANCR

The first collaboration between the national cancer registries took place right at the beginning of the registration in a new country.There was a vivid exchange of visits, experiences and information when cancer registries were founded. In the early 1950s, contacts with Denmark and Norway were of vital importance for the Finnish Cancer Registry.

All the countries were represented at the Inter-European symposium to be held in 1955 in Copenhagen at the initiative of Dr. Johannes Clemmesen. The cancer registries met together with the Nordic Cancer Union already in 1961 in Oslo in the cervical cancer symposium, and a more systematic annual meeting practice was started in 1966 in Imatra, Finland.

The first ANCR board had the following representatives: 

  • Erkki Saxen and Matti Hakama from Finland
  • Niels Ringertz and Dag Swenson from Sweden
  • Einar Pedersen and Torbjørn Mork from Norway
  • Olafur Bjarnason (Island)

Denmark was missing from this very first ANCR board. 

The aim of the collaboration was to compare the cancer incidence rates in the countries and to use that comparison in order to find out factors that explain the differences. It was realized that technical factors, definitions etc. also play an important role, and therefore a lot of attention was focused also on standardization of definitions and practices.

Over the years, extensive comparisons between the countries have been published as journal supplements, e.g., in incidence, incidence trends and maps, incidence and mortality predictions, occupational cancer, effects of cancer screening, population-based survival rates and the reasons behind them, and estimates on avoidable cancer in the Nordic countries. These results have also been communicated in local languages to the Nordic and national authorities. High-quality epidemiological collaboration has been conducted, e.g., in childhood cancer and using biological specimen banks leading to important discoveries in the aetiology of cancer.

In 2000 the registries had the NORDCAN (link til PC-Nordcan) programme developed, enabling easy access to basic cancer statistics as incidence and mortality in the Nordic countries on a regional level. A survey of registration practises initiated the work on this programme (see survey).(Link til Cancer Registry Survey)

The data from each registry is converted to a similar format facilitating comparative research on e.g. survival. The registries thus play an important role in monitoring the effects of cancer control planning in the Nordic countries. 

The Nordic collaboration has been seminal and provided a good model for international collaboration between cancer registries. The high quality of the data, enthusiastic workers and scientists and the high synergy due to pooling of the efforts and the data has lead the Nordic cancer registry collaboration to achievements better than could be expected from any country with a population of over 23 millions.

Cancer registration in the Nordic countries

The five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) are geographically, historically, culturally and politically related, and their languages, except Finnish, belong to the same group.

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.

A new peer-reviewed paper: 'Nordic Cancer Registries - an overview of their procedures and data comparability' can be found at Nordic Cancer Registries - an overview of their procedures and data comparability.

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.

Activity of the Association of Nordic Cancer Registries from 1990 into the new century

The wealth of high quality information available from the Nordic cancer registries is well established. A series of projects supported by the Nordic Cancer Union (NCU) since the 1970s have addressed topics such as time trends in incidence [1,2], the geographic distribution of cancer (cancer atlases) [3-5], future predictions of cancer incidence and mortality burden [6-9], cancer patient survival [8,10], avoidable cancers [11] and the effectiveness of screening [12].

Information about cancer incidence, mortality, prevalence, and survival combined with studies on risk factors and the quality of treatment and cancer care are a sound basis for comprehensive cancer control plans, as a means of providing situation analyses, and an assessment of the need for specific actions and the impact of subsequent interventions. The need for an easily accessible and comprehensive graphical and statistical tool providing descriptive epidemiological analyses of the data is obvious and the idea to develop NORDCAN was conceived from this principle with a pilot version in 2002 [13] and a full web based version in 2003 [14]. The ambition was to provide a cancer database available for research, complete with comparable and timely data from each of the Nordic countries in a way that was user-friendly and satisfied most of the needs of policy makers, cancer societies, medical professionals, journalists, and the general public. After more than 15 years of operation lead by the Danish Cancer Society the coordinating responsibility was moved to the Cancer registry of Norway. A new GDPR compliant method of data collection with data preparation in each registry and anonymous data upload to a common database a new modernised NORDCAN presentation software made by IARC was launched. Alongside this, update projects on cancer survival and avoidable cancers were completed demonstrating further improvement in survival and a large potential for primary prevention targeting tobacco, overweight and alcohol. 

The ANCR in 1991 launched under the leadership of Ole Møller Jensen a summer school in cancer epidemiology targeting pregraduate students in medicine, statistic, biology, epidemiology and public health. Since 1993 until 2019 the school was run funded by NCU bi-annually headed by Hans Storm (Denmark) and Lyly Teppo, Eero Pukkala (Finland). Every second year, 25 students evenly distributed between the 5 Nordic countries participate. Gradually the course has developed into a mixed pre- and postgraduate course. Many of the students have later pursued a career in cancer research - especially cancer epidemiology - in the Nordic countries. In 2010 a little over 1500 peer reviewed publications had emerged authored by former summer school students. 

Integration of clinical cancer databases in the work of cancer registries has developed over the years thus linking the population-based epidemiology to the clinical work widening the scope of research using cancer registries. The link varies between the Nordic countries from being fully integrated in the existing cancer registry structure to data linkage to independent research databases providing and receiving data from the population-based cancer registries. This - coupled with high quality population data in central statistical bureaus, pharmacological, screening and occupational and databases as well as large biorepositories  - makes the Nordic collaboration in cancer an international stronghold in population-based cancer research. 

The Association host a scientific seminar every year – in turn between the five countries.  The seminar is an instrument for presenting and discussing analysis of cancer registry data alone, the impact of changes in classification and registration methods, legal obstacles etc. Further research linking to and using cancer registry data is presented, research collaboration in the Nordic countries on cancer data initiated, and young staff are given the opportunity to present and discuss their projects with peers in the field. 

References:

  1. Hakulinen T, Andersen A, Malker B, Pukkala, E, Schou G, Tulinius H. Trends in cancer incidence in the Nordic countries. A collaborative study of the five Nordic Cancer Registries. APMIS 1986;94(Suppl 288):1–151.
  2. Andersen A., Barlow, L., Engeland, A., Kjærheim, K., Lynge, E., Pukkala, E.: Work-related cancer in the Nordic countries. Scand. J. Work Environ. Health 1999; 25: Suppl. 2 (116 pages).
  3. Tulinius H, Storm, HH, Pukkala E, Andersen A, Ericsson J. Cancer in the Nordic countries 1981–86. A joint publication of the five Nordic Cancer Registries. APMIS 1992;100(Suppl 31):1–194.
  4. Jensen OM, Carstensen B, Glattre E, Malker B, Pukkala E, Tulinius H. Atlas of cancer incidence in the Nordic countries, Helsinki: Nordic Cancer Union; 1988.
  5. Pukkala E, Söderman B, Okeanov A, Storm HH, Rahu M, Hakulinen T. Cancer atlas of Northern Europe. Helsinki: Cancer Society of Finland; 2001. Available from: http://www.cancerregistry.fi/atlasweb/index.htm.
  6. Wiklund K, Hakulinen T, Sparén P. Prediction of cancer mortality in the Nordic Countries in 2005: Effects of various interventions. Eur J Cancer Prev 1992;1:247–58.
  7. Engeland A, Haldorsen T, Tretli S, Hakulinen T, Hörte LG, Luostarinen T. Prediction of cancer incidence in the Nordic countries up to the years 2000 and 2010. A collaborative study of the five Nordic Cancer Registries. APMIS 1993;101(Suppl 38):1–124.
  8. Engeland A, Haldorsen T, Tretli S, Hakulinen T, Hörte LG, Luostarinen T. Prediction of cancer mortality in the Nordic countries up to the years 2000 and 2010, on the basis of relative survival analysis. A collaborative study of the five Nordic Cancer Registries. APMIS 1995;103(Suppl 49):1–161.
  9. Møller B, Fekjaer H, Hakulinen T, Tryggvadóttir L, Storm HH, Talbäck M. Prediction of cancer incidence in the Nordic countries up to the year 2020. Eur J Cancer Prev 2002;11(Suppl 1):S1–S96.
  10. Engeland A, Haldorsen T, Dickman PW, Hakulinen T, Möller TR, Storm HH. Relative survival of cancer patients—a comparison between Denmark and the other Nordic countries. Acta Oncol 1998;37:49–59.
  11. Olsen JH, Andersen A, Dreyer L, Pukkala E, Tryggvadóttir L, Gerhardsson de Verdier M. Avoidable cancers in the Nordic countries. APMIS 1997;105(Suppl 76):1–146.
  12. Hristova L, Hakama M. Effect of screening for cancer in the Nordic countries on deaths, cost and quality of life up to the year 2017. Acta Oncol 1997;36(Suppl 9):1–60.13.
  13. Association of Nordic Cancer Registries. NORDCAN: Cancer incidence and mortality in the Nordic countries. Years 1973–97. Version 1.0. Danish Cancer Society. Copenhagen; 2002. Electronic publication.
  14. Storm H, Engholm G, Ferlay J, Langmark F, Ólafsdóttir E, Pukkala E. NORDCAN: Cancer incidence and mortality in the Nordic countries, Version 2.0. Years 1970–99. Danish Cancer Society. Copenhagen, 2003. Electronic publication.

Statutes of the Association of the Nordic Cancer Registries

Important dates in the develop of the ANCR can be found here

Links of interest to cancer registries and cancer epidemiologists

NORDCAN on the web