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

Danish Center for Particle Therapy Aarhus University Hospital Aarhus Denmark

Department of Clinical Surgical Diagnostic and Pediatric Sciences University of Pavia Pavia Italy; Clinical Department National Center for Oncological Hadrontherapy Pavia Italy

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

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; OncoRay National Center for Radiation Research in Oncology Dresden Germany; Helmholtz Zentrum Dresden Rossendorf Institute of Radiooncology OncoRay 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

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

Proton Therapy Center Czech Prague Czech Republic

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

Radiation Oncology Dept Centre Léon Bérard Lyon France

The Skandion Clinic Uppsala Sweden; Department of Immunology Genetics and Pathology Uppsala University Sweden

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

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