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

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...

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Autores principales: Larønningen, Siri, Skog, Anna, Engholm, Gerda, Ferlay, Jacques, Johannesen, Tom Børge, Kristiansen, Marnar Fríðheim, Knoors, Daan, Kønig, Simon Mathis, Olafsdottir, Elinborg J., Pejicic, Sasha, Pettersson, David, Skovlund, Charlotte Wessel, Storm, Hans H., Tian, Huidong, Aagnes, Bjarte, Miettinen, Joonas
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10442944/
https://www.ncbi.nlm.nih.gov/pubmed/37614501
http://dx.doi.org/10.3389/fonc.2023.1098342
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author Larønningen, Siri
Skog, Anna
Engholm, Gerda
Ferlay, Jacques
Johannesen, Tom Børge
Kristiansen, Marnar Fríðheim
Knoors, Daan
Kønig, Simon Mathis
Olafsdottir, Elinborg J.
Pejicic, Sasha
Pettersson, David
Skovlund, Charlotte Wessel
Storm, Hans H.
Tian, Huidong
Aagnes, Bjarte
Miettinen, Joonas
author_facet Larønningen, Siri
Skog, Anna
Engholm, Gerda
Ferlay, Jacques
Johannesen, Tom Børge
Kristiansen, Marnar Fríðheim
Knoors, Daan
Kønig, Simon Mathis
Olafsdottir, Elinborg J.
Pejicic, Sasha
Pettersson, David
Skovlund, Charlotte Wessel
Storm, Hans H.
Tian, Huidong
Aagnes, Bjarte
Miettinen, Joonas
author_sort Larønningen, Siri
collection PubMed
description 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.
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spelling pubmed-104429442023-08-23 Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data Larønningen, Siri Skog, Anna Engholm, Gerda Ferlay, Jacques Johannesen, Tom Børge Kristiansen, Marnar Fríðheim Knoors, Daan Kønig, Simon Mathis Olafsdottir, Elinborg J. Pejicic, Sasha Pettersson, David Skovlund, Charlotte Wessel Storm, Hans H. Tian, Huidong Aagnes, Bjarte Miettinen, Joonas Front Oncol Oncology 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. Frontiers Media S.A. 2023-08-08 /pmc/articles/PMC10442944/ /pubmed/37614501 http://dx.doi.org/10.3389/fonc.2023.1098342 Text en Copyright © 2023 Larønningen, Skog, Engholm, Ferlay, Johannesen, Kristiansen, Knoors, Kønig, Olafsdottir, Pejicic, Pettersson, Skovlund, Storm, Tian, Aagnes and Miettinen https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Oncology
Larønningen, Siri
Skog, Anna
Engholm, Gerda
Ferlay, Jacques
Johannesen, Tom Børge
Kristiansen, Marnar Fríðheim
Knoors, Daan
Kønig, Simon Mathis
Olafsdottir, Elinborg J.
Pejicic, Sasha
Pettersson, David
Skovlund, Charlotte Wessel
Storm, Hans H.
Tian, Huidong
Aagnes, Bjarte
Miettinen, Joonas
Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title_full Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title_fullStr Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title_full_unstemmed Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title_short Nordcan.R: a new tool for federated analysis and quality assurance of cancer registry data
title_sort nordcan.r: a new tool for federated analysis and quality assurance of cancer registry data
topic Oncology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10442944/
https://www.ncbi.nlm.nih.gov/pubmed/37614501
http://dx.doi.org/10.3389/fonc.2023.1098342
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