Towards a European prospective data registry for particle therapy

Cai Grau; Alexandru Dasu; Esther G.C. Troost; Karin Haustermans; Damien C. Weber; Johannes A. Langendijk; Vincent Gregoire; Ester Orlandi; Juliette Thariat; Neige Journy; Abdulhamid Chaikh; Aurelie Isambert; Barbara Alicja Jereczek-Fossa; Ana Vaniqui; Pavel Vitek; Renata Kopec; Rianne Fijten; Carola Luetgendorf-Caucig; Pawel Olko

doi:10.1016/j.radonc.2024.110293

Towards a European prospective data registry for particle therapy

Cai Grau, Alexandru Dasu, Esther G.C. Troost, Karin Haustermans, Damien C. Weber, Johannes A. Langendijk, Vincent Gregoire, Ester Orlandi, Juliette Thariat, Neige Journy, Abdulhamid Chaikh, Aurelie Isambert, Barbara Alicja Jereczek-Fossa, Ana Vaniqui, Pavel Vitek, Renata Kopec, Rianne Fijten, Carola Luetgendorf-Caucig, Pawel Olko

Research output › peer-review

Abstract

The evidence for the value of particle therapy (PT) is still sparse. While randomized trials remain a cornerstone for robust comparisons with photon-based radiotherapy, data registries collecting real-world data can play a crucial role in building evidence for new developments. This Perspective describes how the European Particle Therapy Network (EPTN) is actively working on establishing a prospective data registry encompassing all patients undergoing PT in European centers. Several obstacles and hurdles are discussed, for instance harmonization of nomenclature and structure of technical and dosimetric data and data protection issues. A preferred approach is the adoption of a federated data registry model with transparent and agile governance to meet European requirements for data protection, transfer, and processing. Funding of the registry, especially for operation after the initial setup process, remains a major challenge.

Original language	English
Article number	110293
Number of pages	9
Journal	Radiotherapy and Oncology
Volume	196
DOIs	https://doi.org/10.1016/j.radonc.2024.110293
State	Published - Jul 2024

Funding

The initiative to prepare this paper was born during the Workshop organized in Krak\u00F3w at the Institute of Nuclear Physics Polish Academy of Sciences on 13 Nov. 2023 in frame of the PIANOFORTE EC project partnership within the European Union's \u201CEURATOM\u201D research and innovation program under the 101061037 grant agreement. The initiative to prepare this paper was born during the Workshop organized Krak\u00F3w at the Institute of Nuclear Physics Polish Academy of Sciences on 13 Nov. 2023 in frame of the PIANOFORTE EC project partnership within the European Union's \u201CEURATOM\u201D research and innovation program under the 101061037 grant agreement.

Funders	Funder number
EURATOM” research and innovation program	101061037

ASJC Scopus subject areas

Hematology
Oncology
Radiology Nuclear Medicine and imaging

Access to Document

10.1016/j.radonc.2024.110293License: Unspecified

Cite this

Grau, C., Dasu, A., Troost, E. G. C., Haustermans, K., Weber, D. C., Langendijk, J. A., Gregoire, V., Orlandi, E., Thariat, J., Journy, N., Chaikh, A., Isambert, A., Alicja Jereczek-Fossa, B., Vaniqui, A., Vitek, P., Kopec, R., Fijten, R., Luetgendorf-Caucig, C., & Olko, P. (2024). Towards a European prospective data registry for particle therapy. Radiotherapy and Oncology, 196, Article 110293. https://doi.org/10.1016/j.radonc.2024.110293

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title = "Towards a European prospective data registry for particle therapy",

abstract = "The evidence for the value of particle therapy (PT) is still sparse. While randomized trials remain a cornerstone for robust comparisons with photon-based radiotherapy, data registries collecting real-world data can play a crucial role in building evidence for new developments. This Perspective describes how the European Particle Therapy Network (EPTN) is actively working on establishing a prospective data registry encompassing all patients undergoing PT in European centers. Several obstacles and hurdles are discussed, for instance harmonization of nomenclature and structure of technical and dosimetric data and data protection issues. A preferred approach is the adoption of a federated data registry model with transparent and agile governance to meet European requirements for data protection, transfer, and processing. Funding of the registry, especially for operation after the initial setup process, remains a major challenge.",

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author = "Cai Grau and Alexandru Dasu and Troost, {Esther G.C.} and Karin Haustermans and Weber, {Damien C.} and Langendijk, {Johannes A.} and Vincent Gregoire and Ester Orlandi and Juliette Thariat and Neige Journy and Abdulhamid Chaikh and Aurelie Isambert and {Alicja Jereczek-Fossa}, Barbara and Ana Vaniqui and Pavel Vitek and Renata Kopec and Rianne Fijten and Carola Luetgendorf-Caucig and Pawel Olko",

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Grau, C, Dasu, A, Troost, EGC, Haustermans, K, Weber, DC, Langendijk, JA, Gregoire, V, Orlandi, E, Thariat, J, Journy, N, Chaikh, A, Isambert, A, Alicja Jereczek-Fossa, B, Vaniqui, A, Vitek, P, Kopec, R, Fijten, R, Luetgendorf-Caucig, C & Olko, P 2024, 'Towards a European prospective data registry for particle therapy', Radiotherapy and Oncology, vol. 196, 110293. https://doi.org/10.1016/j.radonc.2024.110293

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AU - Chaikh, Abdulhamid

AU - Isambert, Aurelie

AU - Alicja Jereczek-Fossa, Barbara

AU - Vaniqui, Ana

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