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Use of Linked Nordic Registries for Population Studies in Hematologic Cancers : The Case of Multiple Myeloma

Abildgaard, Niels ; Freilich, Jonatan ; Anttila, Pekka ; Bent-Ennakhil, Nawal ; Ma, Yuanjun ; Lassenius, Mariann ; Ørstavik, Sigurd ; Toppila, Iiro ; Waage, Anders and Turesson, Ingemar LU , et al. (2023) In Clinical Epidemiology 15. p.987-999
Abstract

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) wasselected 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 newlydiagnosed with MM who received MM-specific treatment were included. PDR/NPR treatment records were used to assess incidentNPR cases. The registration quality of... (More)

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) wasselected 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 newlydiagnosed with MM who received MM-specific treatment were included. PDR/NPR treatment records were used to assess incidentNPR 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 systematicdifferences were identified that could explain this discrepancy. In Denmark, lenalidomide and bortezomib were registered in the NPRwith 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 coveragein the PDR.Conclusions: The registries evaluated in this study can be used to identify the MM population; however, given the gaps in MMregistration in the Finnish and Swedish CRs, Danish registries provide the most comprehensive datasets for research on treatmentpatterns for MM.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
incidence, prevalence, real-world evidence
in
Clinical Epidemiology
volume
15
pages
13 pages
publisher
Dove Medical Press Ltd.
external identifiers
  • pmid:37745645
  • scopus:85175007116
ISSN
1179-1349
DOI
10.2147/CLEP.S413587
language
English
LU publication?
yes
id
ba36be1e-28f4-4d73-a809-bef2c8003e96
date added to LUP
2023-12-18 12:43:28
date last changed
2024-04-17 00:53:39
@article{ba36be1e-28f4-4d73-a809-bef2c8003e96,
  abstract     = {{<p>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) wasselected 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 newlydiagnosed with MM who received MM-specific treatment were included. PDR/NPR treatment records were used to assess incidentNPR 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 systematicdifferences were identified that could explain this discrepancy. In Denmark, lenalidomide and bortezomib were registered in the NPRwith 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 coveragein the PDR.Conclusions: The registries evaluated in this study can be used to identify the MM population; however, given the gaps in MMregistration in the Finnish and Swedish CRs, Danish registries provide the most comprehensive datasets for research on treatmentpatterns for MM.</p>}},
  author       = {{Abildgaard, Niels and Freilich, Jonatan and Anttila, Pekka and Bent-Ennakhil, Nawal and Ma, Yuanjun and Lassenius, Mariann and Ørstavik, Sigurd and Toppila, Iiro and Waage, Anders and Turesson, Ingemar and Hansson, Markus}},
  issn         = {{1179-1349}},
  keywords     = {{incidence; prevalence; real-world evidence}},
  language     = {{eng}},
  pages        = {{987--999}},
  publisher    = {{Dove Medical Press Ltd.}},
  series       = {{Clinical Epidemiology}},
  title        = {{Use of Linked Nordic Registries for Population Studies in Hematologic Cancers : The Case of Multiple Myeloma}},
  url          = {{http://dx.doi.org/10.2147/CLEP.S413587}},
  doi          = {{10.2147/CLEP.S413587}},
  volume       = {{15}},
  year         = {{2023}},
}