The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-rel...

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Published inActa oncologica Vol. 59; no. 11; pp. 1343 - 1356
Main Authors Nilbert, Mef, Thomsen, Linda Aagaard, Winther Jensen, Jens, Møller, Henrik, Borre, Michael, Widenlou Nordmark, Arvid, Lambe, Mats, Brändström, Helena, Kørner, Hartwig, Møller, Bjørn, Ursin, Giske
Format Journal Article
LanguageEnglish
Published Taylor & Francis 01.11.2020
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Summary:In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data sharing. The clinical registry framework provides an empirical basis for evidence-based development of high-quality and equitable cancer care. The registries can be used to follow implementation of new treatment principles and monitor patterns of care across geographical areas and patient groups. At the same time, the lessons learnt suggest that further developments and coordination are needed to utilize the full potential of the registry initiative in cancer care.
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ISSN:0284-186X
1651-226X
1651-226X
DOI:10.1080/0284186X.2020.1820573