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dc.contributor.authorNilbert, Mef
dc.contributor.authorThomsen, Linda Aagaard
dc.contributor.authorWinther Jensen, Jens
dc.contributor.authorMøller, Henrik
dc.contributor.authorBorre, Michael
dc.contributor.authorWidenlou Nordmark, Arvid
dc.contributor.authorLambe, Mats
dc.contributor.authorBrändström, Helena
dc.contributor.authorKørner, Hartwig
dc.contributor.authorMøller, Bjørn
dc.contributor.authorUrsin, Giske
dc.PublishedActa Oncologica. 2020, 1-14.
dc.description.abstractBackground 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. Aim 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. Results and conclusions 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.en_US
dc.publisherTaylor & Francisen_US
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internasjonal*
dc.titleThe power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer careen_US
dc.typeJournal articleen_US
dc.typePeer revieweden_US
dc.rights.holderCopyright 2020 The Author(s).en_US
dc.source.journalActa Oncologicaen_US
dc.identifier.citationActa Oncologica. 2020, 59 (11)en_US

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Attribution-NonCommercial-NoDerivatives 4.0 Internasjonal
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