title: Creating a data exchange strategy for radiotherapy research: towards federated databases and anonymised public datasets.
abstract: Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate translational research in radiation therapy and oncology. The exchange of study data is one of the fundamental principles behind data aggregation and data mining. The possibilities of reproducing the original study results, performing further analyses on existing research data to generate new hypotheses or developing computational models to support medical decisions (e.g. risk/benefit analysis of treatment options) represent just a fraction of the potential benefits of medical data-pooling. Distributed machine learning and knowledge exchange from federated databases can be considered as one beyond other attractive approaches for knowledge generation within "Big Data". Data interoperability between research institutions should be the major concern behind a wider collaboration. Information captured in electronic patient records (EPRs) and study case report forms (eCRFs), linked together with medical imaging and treatment planning data, are deemed to be fundamental elements for large multi-centre studies in the field of radiation therapy and oncology. To fully utilise the captured medical information, the study data have to be more than just an electronic version of a traditional (un-modifiable) paper CRF. Challenges that have to be addressed are data interoperability, utilisation of standards, data quality and privacy concerns, data ownership, rights to publish, data pooling architecture and storage. This paper discusses a framework for conceptual packages of ideas focused on a strategic development for international research data exchange in the field of radiation therapy and oncology.
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany. Electronic address: t.skripcak@dkfz.de.
authors.forename: Tomas
authors.initials: T
authors.lastname: Skripcak
authors.affiliation: German Cancer Consortium (DKTK) Munich and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Claus
authors.initials: C
authors.lastname: Belka
authors.affiliation: Dept. of Radiation Oncology, Washington University, St. Louis, MO, USA.
authors.forename: Walter
authors.initials: W
authors.lastname: Bosch
authors.affiliation: Laboratory of Radiation Physics, Odense University Hospital, Odense, Denmark; Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
authors.forename: Carsten
authors.initials: C
authors.lastname: Brink
authors.affiliation: German Cancer Consortium (DKTK) Freiburg and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Thomas
authors.initials: T
authors.lastname: Brunner
authors.affiliation: German Cancer Consortium (DKTK) Berlin, German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Volker
authors.initials: V
authors.lastname: Budach
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Daniel
authors.initials: D
authors.lastname: Büttner
authors.affiliation: German Cancer Consortium (DKTK) Heidelberg and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Debus
authors.affiliation: Dept. of Radiation Oncology (MAASTRO), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors.forename: Andre
authors.initials: A
authors.lastname: Dekker
authors.affiliation: CIRRO Department of Oncology, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Cai
authors.initials: C
authors.lastname: Grau
authors.affiliation: Joint Department of Physics, The Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Gulliford
authors.affiliation: Dept. of Radiation Oncology, Catharina Hospital, Eindhoven, The Netherlands; EORTC-Radiation Oncology Group, Brussels, Belgium; EORTC-Global Clinical Trial QART Harmonisation Group, Brussels, Belgium.
authors.forename: Coen
authors.initials: C
authors.lastname: Hurkmans
authors.affiliation: Dept. of Radiation Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden, Germany.
authors.forename: Uwe
authors.initials: U
authors.lastname: Just
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany; Dept. of Radiation Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden, Germany; OncoRay - National Center for Radiation Research in Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden and Helmholtz-Zentrum Dresden-Rossendorf, Germany; Institute of Radiooncology, Helmholtz-Zentrum Dresden-Rossendorf, Germany.
authors.forename: Mechthild
authors.initials: M
authors.lastname: Krause
authors.affiliation: Dept. of Radiation Oncology (MAASTRO), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors.forename: Philippe
authors.initials: P
authors.lastname: Lambin
authors.affiliation: University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Johannes A
authors.initials: JA
authors.lastname: Langendijk
authors.affiliation: Department of Radiation Oncology, Centre Georges - François Leclerc, Dijon Cedex, France.
authors.forename: Rolf
authors.initials: R
authors.lastname: Lewensohn
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany; OncoRay - National Center for Radiation Research in Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden and Helmholtz-Zentrum Dresden-Rossendorf, Germany.
authors.forename: Armin
authors.initials: A
authors.lastname: Lühr
authors.affiliation: EORTC-Radiation Oncology Group, Brussels, Belgium; Department of Radiation Oncology, Centre Georges - François Leclerc, Dijon Cedex, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Maingon
authors.affiliation: EurocanPlatform and Karolinska Institutet Stockholm, Sweden.
authors.forename: Michele
authors.initials: M
authors.lastname: Masucci
authors.affiliation: German Cancer Consortium (DKTK) Munich and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Maximilian
authors.initials: M
authors.lastname: Niyazi
authors.affiliation: Department of Radiation Oncology, Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: Philip
authors.initials: P
authors.lastname: Poortmans
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Monique
authors.initials: M
authors.lastname: Simon
authors.affiliation: ARO-Speaker, University Medical Center Mainz, Germany.
authors.forename: Heinz
authors.initials: H
authors.lastname: Schmidberger
authors.affiliation: Dept. of Medical Physics, Velindre Cancer Centre, Cardiff, UK.
authors.forename: Emiliano
authors.initials: E
authors.lastname: Spezi
authors.affiliation: German Cancer Consortium (DKTK) Essen/Düsseldorf and German Cancer Research Center (DKFZ) Heidelberg, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Stuschke
authors.affiliation: Radiation Oncology Department GEMELLI-ART, Universita Cattolica S. Cuore, Rome, Italy.
authors.forename: Vincenzo
authors.initials: V
authors.lastname: Valentini
authors.affiliation: Department of Radiation Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
authors.forename: Marcel
authors.initials: M
authors.lastname: Verheij
authors.affiliation: The Christie NHS Foundation Trust and the University of Manchester, Manchester, UK.
authors.forename: Gillian
authors.initials: G
authors.lastname: Whitfield
authors.affiliation: Umea University, Department of Radiation Sciences, Oncology, Umea, Sweden.
authors.forename: Björn
authors.initials: B
authors.lastname: Zackrisson
authors.affiliation: German Cancer Consortium (DKTK) Tübingen and German Cancer Research Center (DKFZ) Heidelberg, Germany; Radiation Oncology, Medical Faculty and University Hospital Tübingen, Eberhard Karls University Tübingen, Germany; Chair Clinical Committee, ESTRO.
authors.forename: Daniel
authors.initials: D
authors.lastname: Zips
authors.affiliation: German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany; Dept. of Radiation Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden, Germany; OncoRay - National Center for Radiation Research in Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden and Helmholtz-Zentrum Dresden-Rossendorf, Germany; Institute of Radiooncology, Helmholtz-Zentrum Dresden-Rossendorf, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Baumann
mesh_terms: D035843:Biomedical Research / Q000379:methods / Q000458:organization & administration*; D003625:Data Collection / Q000379:methods*; D057225:Data Mining / Q000379:methods*; D016208:Databases, Factual; D057286:Electronic Health Records / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D007391:International Cooperation; D009369:Neoplasms / Q000532:radiotherapy*; D012107:Research Design
keywords: Data exchange; Data pooling; Interoperability; Large scale studies; Public data; Radiotherapy