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Towards a European prospective data registry for particle therapy

C. Grau, A. Dasu, EGC. Troost, K. Haustermans, DC. Weber, JA. Langendijk, V. Gregoire, E. Orlandi, J. Thariat, N. Journy, A. Chaikh, A. Isambert, BA. Jereczek-Fossa, A. Vaniqui, P. Vitek, R. Kopec, R. Fijten, C. Luetgendorf-Caucig, P. Olko

. 2024 ; 196 (-) : 110293. [pub] 20240421

Jazyk angličtina Země Irsko

Typ dokumentu časopisecké články, úvodníky

Perzistentní odkaz   https://www.medvik.cz/link/bmc24013390

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.

Belgian Nuclear Research Center Mol Belgium

Clinical Department National Center for Oncological Hadrontherapy Pavia Italy

Danish Center for Particle Therapy Aarhus University Hospital Aarhus Denmark

Department of Clinical Surgical Diagnostic and Pediatric Sciences University of Pavia Pavia Italy

Department of Immunology Genetics and Pathology Uppsala University Sweden

Department of Radiation Oncology GROW School for Oncology and Reproduction Maastricht University Medical Centre Maastricht the Netherlands

Department of Radiation Oncology Inselspital Bern University Hospital University of Bern Switzerland

Department of Radiation Oncology University Hospital KU Leuven Leuven Belgium

Department of Radiation Oncology University Medical Center Groningen University of Groningen Groningen the Netherlands

Department of Radiotherapy and Radiation Oncology Faculty of Medicine and University Hospital Carl Gustav Carus Technische Universität Dresden Dresden Germany

Dept of Oncology and Hemato oncology University of Milan Milan Italy

Dept of Radiation Oncology IEO European Institute of Oncology IRCCS Milan Italy

Helmholtz Zentrum Dresden Rossendorf Institute of Radiooncology OncoRay Dresden Germany

Institut de Radioprotection et de Sûreté Nucléaire IRSN PSE SANTE SER UEM France

Institute of Nuclear Physics Polish Academy of Sciences Kraków Poland

MedAustron Ion Therapy Center Wiener Neustadt Austria

National Institute of Health and Medical Research Unit 1018 Centre for Research in Epidemiology and Population Health Paris Saclay University Gustave Roussy Villejuif France

OncoRay National Center for Radiation Research in Oncology Dresden Germany

Proton Therapy Center Czech Prague Czech Republic

Proton Therapy Center Paul Scherrer Institute ETH Domain Switzerland

Radiation Oncology Department University Hospital Zürich Switzerland

Radiation Oncology Dept Centre Léon Bérard Lyon France

The Skandion Clinic Uppsala Sweden

Université de Caen Normandie ENSICAEN CNRS IN2P3 LPC Caen UMR6534 F 14000 Centre François Baclesse Caen France

Citace poskytuje Crossref.org

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$a The evidence for the value of particle therapy (PT) is still sparse. While randomized trials remain a cornerstone for robust comparisons with photon-based radiotherapy, data registries collecting real-world data can play a crucial role in building evidence for new developments. This Perspective describes how the European Particle Therapy Network (EPTN) is actively working on establishing a prospective data registry encompassing all patients undergoing PT in European centers. Several obstacles and hurdles are discussed, for instance harmonization of nomenclature and structure of technical and dosimetric data and data protection issues. A preferred approach is the adoption of a federated data registry model with transparent and agile governance to meet European requirements for data protection, transfer, and processing. Funding of the registry, especially for operation after the initial setup process, remains a major challenge.
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$a Dasu, Alexandru $u The Skandion Clinic, Uppsala, Sweden; Department of Immunology, Genetics and Pathology, Uppsala University, Sweden. Electronic address: alexandru.dasu@skandion.se
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$a Troost, Esther G C $u Department of Radiotherapy and Radiation Oncology, Faculty of Medicine and University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany; OncoRay - National Center for Radiation Research in Oncology, Dresden, Germany; Helmholtz-Zentrum Dresden - Rossendorf, Institute of Radiooncology - OncoRay, Dresden, Germany. Electronic address: Esther.Troost@ukdd.de
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$a Haustermans, Karin $u Department of Radiation Oncology, University Hospital, KU Leuven, Leuven, Belgium. Electronic address: karin.haustermans@uzleuven.be
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$a Weber, Damien C $u Proton Therapy Center, Paul Scherrer Institute, ETH Domain, Switzerland; Radiation Oncology Department, University Hospital Zürich, Switzerland; Department of Radiation Oncology, Inselspital, Bern University Hospital, University of Bern, Switzerland. Electronic address: damien.weber@psi.ch
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$a Langendijk, Johannes A $u Department of Radiation Oncology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands. Electronic address: j.a.langendijk@umcg.nl
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$a Gregoire, Vincent $u Radiation Oncology Dept., Centre Léon Bérard, Lyon, France. Electronic address: vincent.gregoire@lyon.unicancer.fr
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$a Orlandi, Ester $u Department of Clinical, Surgical, Diagnostic, and Pediatric Sciences, University of Pavia, Pavia, Italy; Clinical Department, National Center for Oncological Hadrontherapy (Fondazione CNAO), Pavia, Italy. Electronic address: ester.orlandi@cnao.it
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$a Thariat, Juliette $u Université de Caen Normandie, ENSICAEN, CNRS/IN2P3, LPC Caen UMR6534, F-14000, Centre François Baclesse, Caen, France
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$a Journy, Neige $u National Institute of Health and Medical Research (INSERM) Unit 1018, Centre for Research in Epidemiology and Population Health, Paris Saclay University, Gustave Roussy, Villejuif, France. Electronic address: neige.journy@gustaveroussy.fr
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$a Chaikh, Abdulhamid $u Institut de Radioprotection et de Sûreté Nucléaire IRSN/PSE-SANTE/SER/UEM, France. Electronic address: abdulhamid.chaikh@irsn.fr
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$a Isambert, Aurelie $u Institut de Radioprotection et de Sûreté Nucléaire IRSN/PSE-SANTE/SER/UEM, France. Electronic address: aurelie.isambert@irsn.fr
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$a Jereczek-Fossa, Barbara Alicja $u Dept. of Oncology and Hemato-oncology, University of Milan, Milan, Italy; Dept. of Radiation Oncology, IEO European Institute of Oncology IRCCS, Milan, Italy. Electronic address: barbara.jereczek@ieo.it
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$a Vaniqui, Ana $u Belgian Nuclear Research Center (SCK CEN), Mol, Belgium. Electronic address: ana.vaniqui@sckcen.be
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$a Vitek, Pavel $u Proton Therapy Center Czech, Prague, Czech Republic. Electronic address: pavel.vitek@ptc.cz
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$a Kopec, Renata $u Institute of Nuclear Physics Polish Academy of Sciences, Kraków, Poland. Electronic address: renata.kopec@ifj.edu.pl
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$a Fijten, Rianne $u Department of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre, Maastricht, the Netherlands. Electronic address: rianne.fijten@maastro.nl
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$a Luetgendorf-Caucig, Carola $u MedAustron Ion Therapy Center, Wiener Neustadt, Austria. Electronic address: carola.luetgendorf-caucig@medaustron.at
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$a Olko, Pawel $u Institute of Nuclear Physics Polish Academy of Sciences, Kraków, Poland. Electronic address: pawel.olko@ifj.edu.pl
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