Invited by Simone Mathoulin-Pélissier – EPICENE team
Elisabete Weiderpass was trained in medicine (1992) and epidemiology (M.Sc., 1994) in Brazil, and in cancer epidemiology at the Karolinska Institutet in Stockholm (Ph.D., 1999; post doc 1999-2000). She serves as Head of the Department of Research at the Cancer Registry of Norway – Institute of Population Based Cancer Research. She is a professor of medical epidemiology at the Karolinska Institutet, and a professor of cancer epidemiology at the Arctic University of Norway. Her main research interests are cancer etiological and prognostic factors, cancer prevention, cancer survival, and cancer registration. She is the elected International Epidemiological Association European councilor and Chairperson of the European Epidemiological Federation, as well as a member of the International Agency for Research on Cancer Scientific Council
The Nordic countries have a long tradition of register-based epidemiological studies. Numerous population-based specialised registers offer high-quality data from individuals, and the extensive use of register data further improves the quality of the registers. Unique personal identity codes given to every resident and used in all registers guarantee easy and accurate record linkage. A legislation that makes the use of existing data possible for purposes that benefit both registered individuals and the society – instead of forcing researchers to use their energy in repeated questionnaire studies disturbing individuals’ privacy and leading to response and recall biases – is a prerequisite for effective epidemiological research. Biobanks can be considered an additional type of registers. They may offer such data from individuals that cannot be reliably collected via questionnaire surveys. In turn, other types of registers are crucial in biobank-based studies (i) in defining for how long the persons in biobank cohorts are at risk of getting the diseases, (ii) to get information on cofactors that may modify the relative risk measured by the biomarkers and (iii) to get information of the long-term outcome events. In this presentation, the possibility of register use for research in the Nordic countries will be summarised. Examples of a massive register use, including both direct linkages on individual level and indirect group level linkages will be given, in particular in relation to studies on cancer aetiology.