Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data
Aims: All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on la...
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crsagepubl:10.1177/1403494817702336 2024-04-28T08:26:04+00:00 Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data Maret-Ouda, John Tao, Wenjing Wahlin, Karl Lagergren, Jesper 2017 http://dx.doi.org/10.1177/1403494817702336 http://journals.sagepub.com/doi/pdf/10.1177/1403494817702336 http://journals.sagepub.com/doi/full-xml/10.1177/1403494817702336 en eng SAGE Publications http://journals.sagepub.com/page/policies/text-and-data-mining-license Scandinavian Journal of Public Health volume 45, issue 17_suppl, page 14-19 ISSN 1403-4948 1651-1905 Public Health, Environmental and Occupational Health General Medicine journal-article 2017 crsagepubl https://doi.org/10.1177/1403494817702336 2024-04-02T08:14:13Z Aims: All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Methods: Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Results: Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Conclusions: Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated. Article in Journal/Newspaper Iceland SAGE Publications Scandinavian Journal of Public Health 45 17_suppl 14 19 |
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English |
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Public Health, Environmental and Occupational Health General Medicine |
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Public Health, Environmental and Occupational Health General Medicine Maret-Ouda, John Tao, Wenjing Wahlin, Karl Lagergren, Jesper Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
topic_facet |
Public Health, Environmental and Occupational Health General Medicine |
description |
Aims: All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Methods: Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Results: Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Conclusions: Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated. |
format |
Article in Journal/Newspaper |
author |
Maret-Ouda, John Tao, Wenjing Wahlin, Karl Lagergren, Jesper |
author_facet |
Maret-Ouda, John Tao, Wenjing Wahlin, Karl Lagergren, Jesper |
author_sort |
Maret-Ouda, John |
title |
Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
title_short |
Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
title_full |
Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
title_fullStr |
Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
title_full_unstemmed |
Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data |
title_sort |
nordic registry-based cohort studies: possibilities and pitfalls when combining nordic registry data |
publisher |
SAGE Publications |
publishDate |
2017 |
url |
http://dx.doi.org/10.1177/1403494817702336 http://journals.sagepub.com/doi/pdf/10.1177/1403494817702336 http://journals.sagepub.com/doi/full-xml/10.1177/1403494817702336 |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
Scandinavian Journal of Public Health volume 45, issue 17_suppl, page 14-19 ISSN 1403-4948 1651-1905 |
op_rights |
http://journals.sagepub.com/page/policies/text-and-data-mining-license |
op_doi |
https://doi.org/10.1177/1403494817702336 |
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Scandinavian Journal of Public Health |
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45 |
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17_suppl |
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14 |
op_container_end_page |
19 |
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1797585612517146624 |