Nordic health registry-based research: A review of health care systems and key registries
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 feature...
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2022
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ftunivturku:oai:www.utupub.fi:10024/163444 2023-05-15T16:50:50+02:00 Nordic health registry-based research: A review of health care systems and key registries Lunde Astrid Schmidt Morten Ludvigsson Jonas F. Sørensen Henrik Toft Gissler Mika Laugesen Kristina Valdimarsdottir Unnur Anna lastenpsykiatrian tutkimuskeskus, Lastenpsykiatrian tutkimuskeskus 2607326 2022-10-28T13:11:28Z 554 533 https://www.utupub.fi/handle/10024/163444 https://www.dovepress.com/nordic-health-registry-based-research-a-review-of-health-care-systems--peer-reviewed-fulltext-article-CLEP en eng Dove Medical Press Ltd New Zealand Uusi-Seelanti NZ 13 10.2147/CLEP.S314959 Clinical Epidemiology https://www.utupub.fi/handle/10024/163444 https://www.dovepress.com/nordic-health-registry-based-research-a-review-of-health-care-systems--peer-reviewed-fulltext-article-CLEP URN:NBN:fi-fe2021093048613 1179-1349 2022 ftunivturku 2022-11-03T00:00:46Z 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. Other/Unknown Material Iceland University of Turku: UTUPub Norway |
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University of Turku: UTUPub |
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ftunivturku |
language |
English |
description |
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. |
author2 |
lastenpsykiatrian tutkimuskeskus, Lastenpsykiatrian tutkimuskeskus 2607326 |
author |
Lunde Astrid Schmidt Morten Ludvigsson Jonas F. Sørensen Henrik Toft Gissler Mika Laugesen Kristina Valdimarsdottir Unnur Anna |
spellingShingle |
Lunde Astrid Schmidt Morten Ludvigsson Jonas F. Sørensen Henrik Toft Gissler Mika Laugesen Kristina Valdimarsdottir Unnur Anna Nordic health registry-based research: A review of health care systems and key registries |
author_facet |
Lunde Astrid Schmidt Morten Ludvigsson Jonas F. Sørensen Henrik Toft Gissler Mika Laugesen Kristina Valdimarsdottir Unnur Anna |
author_sort |
Lunde Astrid |
title |
Nordic health registry-based research: A review of health care systems and key registries |
title_short |
Nordic health registry-based research: A review of health care systems and key registries |
title_full |
Nordic health registry-based research: A review of health care systems and key registries |
title_fullStr |
Nordic health registry-based research: A review of health care systems and key registries |
title_full_unstemmed |
Nordic health registry-based research: A review of health care systems and key registries |
title_sort |
nordic health registry-based research: a review of health care systems and key registries |
publisher |
Dove Medical Press Ltd |
publishDate |
2022 |
url |
https://www.utupub.fi/handle/10024/163444 https://www.dovepress.com/nordic-health-registry-based-research-a-review-of-health-care-systems--peer-reviewed-fulltext-article-CLEP |
geographic |
Norway |
geographic_facet |
Norway |
genre |
Iceland |
genre_facet |
Iceland |
op_relation |
13 10.2147/CLEP.S314959 Clinical Epidemiology https://www.utupub.fi/handle/10024/163444 https://www.dovepress.com/nordic-health-registry-based-research-a-review-of-health-care-systems--peer-reviewed-fulltext-article-CLEP URN:NBN:fi-fe2021093048613 1179-1349 |
_version_ |
1766040963474522112 |