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Danish and Swedish national data collections for cancer – solutions for radiotherapy
Regional Cancer Center West, Western Sweden Healthcare Region, Sweden; Medical Radiation Sciences, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg University, Sweden.
Laboratory of Radiation Physics, Odense University Hospital, Denmark.
Umeå University, Faculty of Medicine, Department of Radiation Sciences.
Department of Experimental Clinical Oncology, Aarhus University Hospital, Denmark; Department of Oncology, Aarhus University Hospital, Denmark.
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2025 (English)In: Clinical Oncology, ISSN 0936-6555, E-ISSN 1433-2981, Vol. 37, article id 103657Article in journal (Refereed) Published
Abstract [en]

Collecting large amounts of radiotherapy (RT) data from clinical systems is known to be a challenging task. Still, data collections outside the original RT systems are needed to follow-up on the quality of cancer care and to improve RT. This paper aims to describe how RT data is collected nationally in Denmark and Sweden for this purpose and gives an overview of the stored information in both countries' national data sources.

Although both countries have clinical national quality registries with broad coverage and completeness for many cancer diagnoses, some were initiated already in the seventies, and less than one in ten includes quantitative information on RT to a level of detail useful for more than basic descriptive statistics. Detailed RT data can, however, be found in Denmark's DICOM Collaboration (DcmCollab) database, initiated in 2009 and in Sweden's quality registry for RT launched in 2023 (SKvaRT). Denmark has collected raw DICOM data for all patients enrolled in clinical trials, with files being directly and automatically transferred to DcmCollab from the original data sources at each RT centre. Sweden collects aggregated RT data into SKvaRT for all patients undergoing RT in Sweden, with DICOM files being transferred and selected alpha-numeric variables forwarded via a local intermediate storage database (MIQA) at each hospital. In designing their respective solutions, both countries have faced similar challenges regarding which RT variables to collect and how to technically link clinical systems to their data repositories. General lessons about how flexibility currently is balanced with storage requirements and data standards are presented here together with future plans to harvest real-world RT data.

Place, publisher, year, edition, pages
Elsevier, 2025. Vol. 37, article id 103657
Keywords [en]
Data collection, National database, Quality parameters, Radiotherapy, Radiotherapy quality assurance, Treatment plan data
National Category
Cancer and Oncology Radiology, Nuclear Medicine and Medical Imaging
Identifiers
URN: urn:nbn:se:umu:diva-231799DOI: 10.1016/j.clon.2024.10.009PubMedID: 39522118Scopus ID: 2-s2.0-85208370694OAI: oai:DiVA.org:umu-231799DiVA, id: diva2:1915683
Available from: 2024-11-25 Created: 2024-11-25 Last updated: 2024-11-25Bibliographically approved

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Karlsson, MikaelNyholm, TufveZackrisson, Björn

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