Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2021 Jul 19:13:533-554.
doi: 10.2147/CLEP.S314959. eCollection 2021.

Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries

Kristina Laugesen  1 , Jonas F Ludvigsson  2   3 , Morten Schmidt  1   4 , Mika Gissler  5   6   7 , Unnur Anna Valdimarsdottir  2   8   9 , Astrid Lunde  10 , Henrik Toft Sørensen  1   11
Affiliations
Review

Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries

Kristina Laugesen et al. Clin Epidemiol. .

Abstract

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: Scandinavian and Nordic countries; epidemiology; health care system; population characteristics; registries.

PubMed Disclaimer

Conflict of interest statement

Dr Ludvigsson coordinates a study on behalf of the Swedish IBD quality register (SWIBREG). This study has received funding from Janssen corporation. The Department of Clinical Epidemiology, Aarhus University Hospital, receives funding for other studies from companies in the form of research grants to (and administered by) Aarhus University. None of these studies have any relation to the present study. All authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
Population statistics for the five Nordic countries, 2018.
Figure 2
Figure 2
Key spending in the Nordic health care systems, 2018/2019 or latest available.
Figure 3
Figure 3
Overview of the operational organization of the Nordic health care systems.
Figure 4
Figure 4
Combining Nordic registries by personal identity number.
Figure 5
Figure 5
The time coverage of selected Nordic population-based registries.
See this image and copyright information in PMC

References

    1. Stephansson O, Kieler H, Haglund B, et al. Selective serotonin reuptake inhibitors during pregnancy and risk of stillbirth and infant mortality. JAMA. 2013;309(1):48–54. doi:10.1001/jama.2012.153812 - DOI - PubMed
    1. Kieler H, Artama M, Engeland A, et al. Selective serotonin reuptake inhibitors during pregnancy and risk of persistent pulmonary hypertension in the newborn: population based cohort study from the five Nordic countries. BMJ. 2012;344:d8012. - PubMed
    1. Bateman BT, Heide-Jørgensen U, Einarsdóttir K, et al. β-blocker use in pregnancy and the risk for congenital malformations: an international cohort study. Ann Intern Med. 2018;169(10):665–673. - PMC - PubMed
    1. Daltveit DS, Klungsøyr K, Engeland A, et al. Cancer risk in individuals with major birth defects: large Nordic population based case-control study among children, adolescents, and adults. BMJ. 2020;371:m4060. - PMC - PubMed
    1. Olén O, Erichsen R, Sachs MC, et al. Colorectal cancer in ulcerative colitis: a Scandinavian population-based cohort study. Lancet. 2020;395(10218):123–131. - PubMed