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Use of linked nordic registries for population studies in hematologic cancers: the case of multiple myeloma
Hematology Research Unit, Department of Hematology, Odense University Hospital, Odense, Denmark; Department of Clinical Research, University of Southern Denmark, Odense, Denmark.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Department of Access Consulting, PAREXEL International, Stockholm, Sweden.
Comprehensive Cancer Center, Department of Hematology, University of Helsinki, Helsinki University Hospital, Helsinki, Finland.
Takeda Pharmaceuticals International AG, Zurich, Switzerland.
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2023 (English)In: Clinical Epidemiology, E-ISSN 1179-1349, Vol. 15, p. 987-999Article in journal (Refereed) Published
Abstract [en]

Purpose: Linked health-care registries and high coverage in Nordic countries lend themselves well to epidemiologic research. Given its relatively high incidence in Western Europe, complexity in diagnosis, and challenges in registration, multiple myeloma (MM) was selected to compare registries in Denmark, Finland, and Sweden.

Patients and Methods: Data were obtained from four archetypal registries in each country (spanning January 2005–October 2018): National Patient Registry (NPR), Prescribed Drug Registry (PDR), Cancer Registry (CR), and Cause of Death Registry. Patients newly diagnosed with MM who received MM-specific treatment were included. PDR/NPR treatment records were used to assess incident NPR cases. The registration quality of MM-specific drugs in the PDR of each country was also evaluated.

Results: In Denmark, only 6% of patients in the NPR were not registered in the CR; in Sweden, it was 16.9%. No systematic differences were identified that could explain this discrepancy. In Denmark, lenalidomide and bortezomib were registered in the NPR with high coverage, but less expensive drugs typically given in combination with bortezomib were not covered in any of the registries. In Finland and Sweden, bortezomib records were not identified in the PDR, but some were in the NPR; other drugs had good coverage in the PDR.

Conclusions: The registries evaluated in this study can be used to identify the MM population; however, given the gaps in MM registration in the Finnish and Swedish CRs, Danish registries provide the most comprehensive datasets for research on treatment patterns for MM.

Place, publisher, year, edition, pages
Dove Medical Press, 2023. Vol. 15, p. 987-999
Keywords [en]
incidence, prevalence, real-world evidence
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:umu:diva-216202DOI: 10.2147/CLEP.S413587ISI: 001072632400001PubMedID: 37745645Scopus ID: 2-s2.0-85175007116OAI: oai:DiVA.org:umu-216202DiVA, id: diva2:1810129
Available from: 2023-11-07 Created: 2023-11-07 Last updated: 2024-07-04Bibliographically approved

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Freilich, Jonatan

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