The DOI matches its Crossref record; 90 of the 90 references it cites were found in a registry or an index.
Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries
Open accessAbstract
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.
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Vos, T., Lim, S. S., Abbafati, C., Abbas, K. M., Abbasi, M., Abbasifard, M., Abbasi-Kangevari, M., Abbastabar, H., Abd-Allah, F., Abdelalim, A., et al. (2020) · The Lancet · doi:10.1016/s0140-6736(20)30925-9 · Cited by 19,358
Self-citationInternational Agency for Research on Cancer
National Cancer Institute (2020) · Definitions · doi:10.32388/pfg7jq · Cited by 9,435
External review and validation of the Swedish national inpatient register
Ludvigsson, J. F., Andersson, E., Ekbom, A., Feychting, M., Kim, J.-L., Reuterwall, C., Heurgren, M., & Olausson, P. O. (2011) · BMC Public Health · doi:10.1186/1471-2458-11-450 · Cited by 5,055
Self-citationThe Danish National Patient Registry: a review of content, data quality, and research potential
Schmidt, M., Schmidt, S. A. J., Sandegaard, J. L., Ehrenstein, V., Pedersen, L., & Sørensen, H. T. (2015) · Clinical Epidemiology · doi:10.2147/clep.s91125 · Cited by 4,769
Self-citationThe Danish Civil Registration System as a tool in epidemiology
Schmidt, M., Pedersen, L., & Sørensen, H. T. (2014) · European Journal of Epidemiology · doi:10.1007/s10654-014-9930-3 · Cited by 3,441
Self-citationThe Swedish personal identity number: possibilities and pitfalls in healthcare and medical research
Ludvigsson, J. F., Otterblad-Olausson, P., Pettersson, B. U., & Ekbom, A. (2009) · European Journal of Epidemiology · doi:10.1007/s10654-009-9350-y · Cited by 2,403
Self-citationWettermark, B., Hammar, N., MichaelFored, C., Leimanis, A., Otterblad Olausson, P., Bergman, U., Persson, I., Sundström, A., Westerholm, B., & Rosén, M. (2007) · Pharmacoepidemiology and Drug Safety · doi:10.1002/pds.1294 · Cited by 1,887
The Danish Register of Causes of Death
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Registers of the Swedish total population and their use in medical research
Ludvigsson, J. F., Almqvist, C., Bonamy, A.-K. E., Ljung, R., Michaëlsson, K., Neovius, M., Stephansson, O., & Ye, W. (2016) · European Journal of Epidemiology · doi:10.1007/s10654-016-0117-y · Cited by 1,674
Self-citationJensen, V. M., & Rasmussen, A. W. (2011) · Scandinavian Journal of Public Health · doi:10.1177/1403494810394715 · Cited by 1,471
Cited by
Bjørk, M.-H., Zoega, H., Leinonen, M. K., Cohen, J. M., Dreier, J. W., Furu, K., Gilhus, N. E., Gissler, M., Hálfdánarson, Ó., Igland, J., et al. (2022) · JAMA Neurology · doi:10.1001/jamaneurol.2022.1269 · Cited by 267
Self-citationSARS-CoV-2 vaccination and myocarditis in a Nordic cohort study of 23 million residents
Karlstad, Ø., Hovi, P., Husby, A., Härkänen, T., Selmer, R. M., Pihlström, N., Hansen, J. V., Nohynek, H., Gunnes, N., Sundström, A., et al. (2022) · JAMA Cardiology · doi:10.1001/jamacardio.2022.0583 · Cited by 221
Martin‐Giacalone, B. A., Lin, A. E., Rasmussen, S. A., Kirby, R. S., Nestoridi, E., Liberman, R. F., Agopian, A. J., Carey, J. C., Cragan, J. D., Forestieri, N., et al. (2023) · American Journal of Medical Genetics Part A · doi:10.1002/ajmg.a.63181 · Cited by 28
Kovács, N., Liska, O., Idara-Umoren, E. O., Mahrouseh, N., & Varga, O. (2023) · PLOS ONE · doi:10.1371/journal.pone.0286192 · Cited by 18
Cohort Profile: Better Health in Late Life
Sørensen, H., Christensen, T., Bøtker, H. E., Christiansen, C., Fuglsang, C., Gribsholt, S., Kristensen, F., Laugesen, K., Laursen, A., Nørgaard, M., et al. (2023) · Clinical Epidemiology · doi:10.2147/clep.s436617 · Cited by 7
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Metadata
- Authors
- Laugesen, K., Ludvigsson, J. F., Schmidt, M., Gissler, M., Valdimarsdottir, U. A., Lunde, A., & Sørensen, H. T.
- Venue
- Clinical Epidemiology
- Publisher
- Informa UK Limited
- Published
- 2021-07
- Volume
- Volume 13
- Pages
- 533-554
- ISSN
- 1179-1349 (ISSN-L)
- OpenAlex
- W3185099007
- Cited by
- 543
- References
- 90
- FWCI
- 61.88
- Type
- journal article
- Language
- en
- Open access
- gold
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- Laugesen, K., Ludvigsson, J. F., Schmidt, M., Gissler, M., Valdimarsdottir, U. A., Lunde, A., & Sørensen, H. T. (2021). Nordic Health Registry-Based Research: A Review of Health Care Systems and Key Registries. Clinical Epidemiology. https://doi.org/10.2147/clep.s314959
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