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. 2023 Aug 8:13:1098342.
doi: 10.3389/fonc.2023.1098342. eCollection 2023.

Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data

Siri Larønningen  1 , Anna Skog  1 , Gerda Engholm  2 , Jacques Ferlay  3 , Tom Børge Johannesen  1 , Marnar Fríðheim Kristiansen  4 , Daan Knoors  5 , Simon Mathis Kønig  2 , Elinborg J Olafsdottir  6 , Sasha Pejicic  7 , David Pettersson  7 , Charlotte Wessel Skovlund  2 , Hans H Storm  2 , Huidong Tian  1 , Bjarte Aagnes  1 , Joonas Miettinen  8
Affiliations

Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data

Siri Larønningen et al. Front Oncol. .

Abstract

Aim of the article: We present our new GDPR-compliant federated analysis programme (nordcan.R), how it is used to compute statistics for the Nordic cancer statistics web platform NORDCAN, and demonstrate that it works also with non-Nordic data.

Materials and methods: We chose R and Stata programming languages for writing nordcan.R. Additionally, the internationally used CRG Tools programme by International Agency for Research on Cancer (IARC/WHO) was employed. A formal assessment of (GDPR-compliant) anonymity of all nordcan.R outputs was performed. In order to demonstrate that nordcan.R also works with non-Nordic data, we used data from the Netherlands Cancer Registry.

Results: nordcan.R, publicly available on Github, takes as input cancer and general population data and produces tables of statistics. Each NORDCAN participant runs nordcan.R locally and delivers its results to IARC for publication. According to our anonymity assessment the data can be shared with international organizations, including IARC. nordcan.R incidence results on Norwegian and Dutch data are highly similar to those produced by two other independent methods.

Conclusion: nordcan.R produces accurate cancer statistics where all personal and sensitive data are kept within each cancer registry. In the age of strict data protection policies, we have shown that international collaboration in cancer registry research and statistics reporting is achievable with the federated analysis approach. Undertakings similar to NORDCAN should consider using nordcan.R.

Keywords: GDPR-compliance; NORDCAN; cancer; epidemiology; federated analysis; harmonization; quality; software.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The handling editor LV declared a past co-authorship with the author TB.

Figures

Figure 1
Figure 1
Old and new data flow for NORDCAN.
Figure 2
Figure 2
Comparison between previous and current number of incident cases for selected entities produced as a standard output by nordcan.R. The Y-axis represents change in number of cases, the X-axis represents year of cancer counts. The changes in all sites (980) are mainly driven by changes in malignant hematopoietic diseases (430) and urinary tract cancers (280).
Figure 3
Figure 3
Comparison of adjusted incidence rates (World) between GCO, official national statistics and nordcan.R for colorectal cancer in Netherland and Norway, men and women separately.
See this image and copyright information in PMC

References

    1. Ringertz N. Epidemiology of gastrointestinal cancers in Scandinavia. I. Report on Denmark, Finland, Norway, and Sweden. Natl Cancer Institute Monograph (1967) 25:219–39. Available at: https://europepmc.org/article/med/3465196. - PubMed
    1. Hakulinen T, Andersen A, Malker B, Pukkala E, Schou G, Tulinius H. Trends in cancer incidence in the Nordic countries. A collaborative study of the five Nordic Cancer Registries. Acta Pathol Microbiol Immunol Scand Suppl (1986) 288:1–151. - PubMed
    1. Jensen OM. Atlas of cancer incidence in the Nordic countries: a collaborative study of the five Nordic cancer registries. Pura Musta, Helsinki: Nordic Cancer Union; (1988).
    1. Tulinius H, Storm H, Pukkala E, Andersen A, Ericsson J. Cancer in the Nordic countries, 1981-86. APMIS (1992) 100(31). Acta pathologica, microbiologica et immunologica scandinavica. Supplementum. p. 194. Available at: https://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&l....
    1. Engeland A, Haldorsen T, Tulinius H, Vaittinen P, Tretli S, Hakulinen T. Prediction of cancer incidence in the Nordic cancer up to the years 2000 and 2010. APMIS (1993) 101(38):1–124. Acta pathologica, microbiologica et immunologica scandinavica. Supplementum. Available at: https://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&l.... - PubMed