Clinical Epidemiology (Jul 2021)
Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries
Abstract
Kristina Laugesen,1 Jonas F Ludvigsson,2,3 Morten Schmidt,1,4 Mika Gissler,5– 7 Unnur Anna Valdimarsdottir,2,8,9 Astrid Lunde,10 Henrik Toft Sørensen1,11 1Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden; 3Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 4Department of Cardiology, Aarhus University Hospital, Aarhus, Denmark; 5Information Services Department, THL Finnish Institute for Health and Welfare, Helsinki, Finland; 6Research Centre for Child Psychiatry, University of Turku, Turku, Finland; 7Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden and Region Stockholm, Academic Primary Health Care Centre, Stockholm, Sweden; 8Center of Public Health Science, Faculty of Medicine, University of Iceland, Reykjavik, Iceland; 9Department of Epidemiology, Harvard TH Chan School of Public Health, Boston, MA, USA; 10Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway; 11KOR, The Danish Advisory Board on Register Based Research, the Danish e-infrastructure Cooperation, Copenhagen, DenmarkCorrespondence: Kristina LaugesenDepartment of Clinical Epidemiology, Aarhus University Hospital, Aurhus, DenmarkTel +45 87167212Email [email protected]: The Nordic countries are Denmark, Finland, Iceland, Norway, and Sweden and comprise a total population of approximately 27 million. The countries provide unique opportunities for joint health registry-based research in large populations with long and complete follow-up, facilitated by shared features, such as the tax-funded and public health care systems, the similar population-based registries, and the personal identity number as unique identifier of all citizens. In this review, we provide an introduction to the health care systems, key registries, and how to navigate the practical and ethical aspects of setting up such studies. For each country, we provide an overview of population statistics and health care expenditures, and describe the operational and administrative organization of the health care system. The Nordic registries provide population-based, routine, and prospective data on individuals lives and health with virtually complete follow-up and exact censoring information. We briefly describe the total population registries, birth registries, patient registries, cancer registries, prescription registries, and causes of death registries with a focus on period of coverage, selected key variables, and potential limitations. Lastly, we discuss some practical and legal perspectives. The potential of joint research is not fully exploited, mainly due to legal and practical difficulties in, for example, cross-border sharing of data. Future tasks include clear and transparent legal pathways and a framework by which practical aspects are facilitated.Keywords: health care system, population characteristics, registries, epidemiology, Scandinavian and Nordic countries
