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

by Hans Storm and Eero Pukkala

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.