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The Capital Region of Denmark - a part of Copenhagen University Hospital
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The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

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  2. Broadening risk profile in familial colorectal cancer type X; increased risk for five cancer types in the national Danish cohort

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  3. Difficult journeys in sarcoma care; socioeconomic disparity added to the multiple challenges of a rare tumor diagnosis

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  4. Meet the Acta Oncologica editorial board

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  • Mef Nilbert
  • Linda Aagaard Thomsen
  • Jens Winther Jensen
  • Henrik Møller
  • Michael Borre
  • Arvid Widenlou Nordmark
  • Mats Lambe
  • Helena Brändström
  • Hartwig Kørner
  • Bjørn Møller
  • Giske Ursin
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BACKGROUND: 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.

Original languageEnglish
JournalActa Oncologica
Volume59
Issue number11
Pages (from-to)1343-1356
Number of pages14
ISSN0284-186X
DOIs
Publication statusPublished - Nov 2020

    Research areas

  • Epidemiology, health data, malignancies, outcome, parameter, quality registries

ID: 60933841