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Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries
Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark.ORCID iD: 0000-0001-7971-8223
Örebro University, School of Medical Sciences. Örebro University Hospital. Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden; Department of Pediatrics, Örebro University Hospital, Örebro, Sweden.ORCID iD: 0000-0003-1024-5602
Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; Department of Cardiology, Aarhus University Hospital, Aarhus, Denmark.ORCID iD: 0000-0002-4935-4059
Information Services Department, THL Finnish Institute for Health and Welfare, Helsinki, Finland; Research Centre for Child Psychiatry, University of Turku, Turku, Finland; Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden; Region Stockholm, Academic Primary Health Care Centre, Stockholm, Sweden.
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2021 (English)In: Clinical Epidemiology, E-ISSN 1179-1349, Vol. 13, p. 533-554Article, review/survey (Refereed) Published
Abstract [en]

The Nordic countries are Denmark, Finland, Iceland, Norway, and Sweden and comprise a total population of approximately 27 million. The countries provide unique oppor-tunities 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.

Place, publisher, year, edition, pages
Dove Medical Press Ltd. , 2021. Vol. 13, p. 533-554
Keywords [en]
health care system, population characteristics, registries, epidemiology, Scandinavian and Nordic countries
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:oru:diva-96251DOI: 10.2147/CLEP.S314959ISI: 000733407900001PubMedID: 34321928Scopus ID: 2-s2.0-85111433189OAI: oai:DiVA.org:oru-96251DiVA, id: diva2:1625018
Note

Funding agency:

Janssen corporation

Available from: 2022-01-05 Created: 2022-01-05 Last updated: 2024-07-04Bibliographically approved

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Ludvigsson, Jonas F.

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Laugesen, KristinaLudvigsson, Jonas F.Schmidt, MortenValdimarsdottir, Unnur Anna
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Health Care Service and Management, Health Policy and Services and Health EconomyPublic Health, Global Health, Social Medicine and Epidemiology

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