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Radiother Oncol. 2014 Dec;113(3):303-9. doi: 10.1016/j.radonc.2014.10.001. Epub 2014 Oct 28.

Creating a data exchange strategy for radiotherapy research: towards federated databases and anonymised public datasets.

Author information

1
German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany. Electronic address: t.skripcak@dkfz.de.
2
German Cancer Consortium (DKTK) Munich and German Cancer Research Center (DKFZ) Heidelberg, Germany.
3
Dept. of Radiation Oncology, Washington University, St. Louis, MO, USA.
4
Laboratory of Radiation Physics, Odense University Hospital, Odense, Denmark; Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
5
German Cancer Consortium (DKTK) Freiburg and German Cancer Research Center (DKFZ) Heidelberg, Germany.
6
German Cancer Consortium (DKTK) Berlin, German Cancer Research Center (DKFZ) Heidelberg, Germany.
7
German Cancer Consortium (DKTK) Dresden and German Cancer Research Center (DKFZ) Heidelberg, Germany.
8
German Cancer Consortium (DKTK) Heidelberg and German Cancer Research Center (DKFZ) Heidelberg, Germany.
9
Dept. of Radiation Oncology (MAASTRO), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands.
10
CIRRO Department of Oncology, Aarhus University Hospital, Aarhus, Denmark.
11
Joint Department of Physics, The Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK.
12
Dept. of Radiation Oncology, Catharina Hospital, Eindhoven, The Netherlands; EORTC-Radiation Oncology Group, Brussels, Belgium; EORTC-Global Clinical Trial QART Harmonisation Group, Brussels, Belgium.
13
Dept. of Radiation Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden, Germany.
14
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.
15
University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
16
Department of Radiation Oncology, Centre Georges - François Leclerc, Dijon Cedex, France.
17
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.
18
EORTC-Radiation Oncology Group, Brussels, Belgium; Department of Radiation Oncology, Centre Georges - François Leclerc, Dijon Cedex, France.
19
EurocanPlatform and Karolinska Institutet Stockholm, Sweden.
20
Department of Radiation Oncology, Radboud University Medical Centre, Nijmegen, The Netherlands.
21
ARO-Speaker, University Medical Center Mainz, Germany.
22
Dept. of Medical Physics, Velindre Cancer Centre, Cardiff, UK.
23
German Cancer Consortium (DKTK) Essen/Düsseldorf and German Cancer Research Center (DKFZ) Heidelberg, Germany.
24
Radiation Oncology Department GEMELLI-ART, Universita Cattolica S. Cuore, Rome, Italy.
25
Department of Radiation Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
26
The Christie NHS Foundation Trust and the University of Manchester, Manchester, UK.
27
Umea University, Department of Radiation Sciences, Oncology, Umea, Sweden.
28
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.

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.

KEYWORDS:

Data exchange; Data pooling; Interoperability; Large scale studies; Public data; Radiotherapy

PMID:
25458128
PMCID:
PMC4648243
DOI:
10.1016/j.radonc.2014.10.001
[Indexed for MEDLINE]
Free PMC Article

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