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

Nilbert, MefLund University,Lunds universitet,Bröstcancer-genetik,Sektion I,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,LUCC: Lunds universitets cancercentrum,Övriga starka forskningsmiljöer,Breastcancer-genetics,Section I,Department of Clinical Sciences, Lund,Faculty of Medicine,LUCC: Lund University Cancer Centre,Other Strong Research Environments,University of Copenhagen,Danish Cancer Society,Hvidovre Hospital (författare)

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.

Thomsen, Linda AagaardDanish Cancer Society (författare)
Winther Jensen, JensThe Danish Clinical Registries (RKKP) (författare)
Møller, HenrikThe Danish Clinical Registries (RKKP) (författare)
Borre, MichaelDanske Multidisciplinære Cancer Grupper (DMCG) (författare)
Widenlou Nordmark, ArvidFederation of Regional Cancer Centers (RCC) (författare)
Lambe, MatsKarolinska Institutet,Karolinska Institute,Federation of Regional Cancer Centers (RCC) (författare)
Brändström, HelenaFederation of Regional Cancer Centers (RCC) (författare)
Kørner, HartwigUniversity of Bergen (författare)
Møller, BjørnCancer Registry of Norway, Institute of Population-Based Cancer Research (författare)
Ursin, GiskeCancer Registry of Norway, Institute of Population-Based Cancer Research (författare)
Bröstcancer-genetikSektion I (creator_code:org_t)

Av författaren/redakt...: Nilbert, Mef; Thomsen, Linda A ...; Winther Jensen, ...; Møller, Henrik; Borre, Michael; Widenlou Nordmar ...; visa fler...; Lambe, Mats; Brändström, Hele ...; Kørner, Hartwig; Møller, Bjørn; Ursin, Giske; visa färre...

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