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

Radiotherapy and Oncology - Tập 113 - Trang 303-309 - 2014
Tomas Skripcak1, Claus Belka2, Walter Bosch3, Carsten Brink4,5, Thomas Brunner6, Volker Budach7, Daniel Büttner1, Jürgen Debus8, Andre Dekker9, Cai Grau10, Sarah Gulliford11, Coen Hurkmans12,13,14, Uwe Just15, Mechthild Krause1,15,16,17, Philippe Lambin9, Johannes A. Langendijk18, Rolf Lewensohn19, Armin Lühr1,16, Philippe Maingon13,19, Michele Masucci20
1German Cancer Consortium (DKTK), Dresden and German Cancer Research Center (DKFZ), Heidelberg, Germany
2German Cancer Consortium (DKTK) Munich and German Cancer Research Center (DKFZ) Heidelberg, Germany
3Dept. of Radiation Oncology, Washington University, St. Louis, MO, USA
4Laboratory of Radiation Physics, Odense University Hospital, Odense, Denmark
5Institute of Clinical Research, University of Southern Denmark, Odense, Denmark
6German Cancer Consortium (DKTK), Freiburg, and German Cancer Research Center (DKFZ), Heidelberg, Germany
7German Cancer Consortium (DKTK) Berlin, German Cancer Research Center (DKFZ) Heidelberg, Germany
8German Cancer Consortium (DKTK) Heidelberg and German Cancer Research Center (DKFZ) Heidelberg, Germany
9Dept. of Radiation Oncology (MAASTRO), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, The Netherlands
10CIRRO Department of Oncology, Aarhus University Hospital, Aarhus, Denmark
11Joint Department of Physics, The Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK
12Dept. of Radiation Oncology, Catharina Hospital, Eindhoven, The Netherlands
13EORTC-Radiation Oncology Group, Brussels, Belgium
14EORTC-Global Clinical Trial QART Harmonisation Group, Brussels, Belgium
15Dept. of Radiation Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden, Germany
16OncoRay – National Center for Radiation Research in Oncology, Medical Faculty and University Hospital Carl Gustav Carus, Technische Universität Dresden and Helmholtz-Zentrum Dresden-Rossendorf, Germany
17Institute of Radiooncology, Helmholtz-Zentrum Dresden-Rossendorf, Germany
18University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
19Department of Radiation Oncology, Centre Georges – François Leclerc, Dijon Cedex, France
20EurocanPlatform and Karolinska Institutet Stockholm, Sweden

Tài liệu tham khảo

Roelofs, 2013, Benefits of a clinical data warehouse with data mining tools to collect data for a radiotherapy trial, Radiother Oncol, 108, 174, 10.1016/j.radonc.2012.09.019 Lambin, 2012, Predicting outcomes in radiation oncology—multifactorial decision support systems, Nat Rev Clin Oncol, 10, 27, 10.1038/nrclinonc.2012.196 Aerts, 2014, Decoding tumour phenotype by noninvasive imaging using a quantitative radiomics approach, Nat Commun, 5 Reymen, 2014, Long-term survival of stage T4N0-1 and single station IIIA-N2 NSCLC patients treated with definitive chemo-radiotherapy using individualised isotoxic accelerated radiotherapy (INDAR), Radiother Oncol, 110, 482, 10.1016/j.radonc.2013.12.005 Stacey, 2014, Decision aids for people facing health treatment or screening decisions, Cochrane Database Syst Rev, 1, 10.1002/14651858.CD001431.pub4 Roelofs, 2012, Results of a multicentric in silico clinical trial (ROCOCO): comparing radiotherapy with photons and protons for non-small cell lung cancer, J Thorac Oncol, 7, 165, 10.1097/JTO.0b013e31823529fc Roelofs, 2010, Design of and technical challenges involved in a framework for multicentric radiotherapy treatment planning studies, Radiother Oncol, 97, 567, 10.1016/j.radonc.2010.08.009 Langendijk, 2013, Selection of patients for radiotherapy with protons aiming at reduction of side effects: the model-based approach, Radiother Oncol, 107, 267, 10.1016/j.radonc.2013.05.007 CDISC Share. https://www.cdisc.org/cdisc-share; 2014. Data protection day 2014: full speed on eu data protection reform. https://www.europa.eu/rapid/press-release_MEMO-14-60_en.htm. Roelofs, 2014, International data-sharing for radiotherapy research: an open-source based infrastructure for multicentric clinical data mining, Radiother Oncol, 110, 370, 10.1016/j.radonc.2013.11.001 Integrating the Healthcare Enterprise. https://www.ihe.net; 2014. Lambin, 2013, Rapid learning health care in oncology – an approach towards decision support systems enabling customised radiotherapy, Radiother Oncol, 109, 159, 10.1016/j.radonc.2013.07.007 Biomedical Research Integrated Domain Group. https://bridgmodel.nci.nih.gov; 2014. de Montjoie J. Introducing the CDISC Standards: New Efficiencies for Medical Research. CDISC. https://www.cdisc.org; 2009. Health Level Seven International. https://www.hl7.org; 2014. Martin, 2013, Prostate radiotherapy clinical trial quality assurance: how real should real time review be? (A TROG-OCOG Intergroup Project), Radiother Oncol, 107, 333, 10.1016/j.radonc.2013.05.015 Data protection legislation. https://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Data-protection-legislation/index.htm; 2014 Protecting health and scientific research in the Data Protection Regulation (2012/0011(COD)): position of non-commercial research organisations and academics. http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/WTP055584.pdf; 2014. Weber R. The right to be forgotten more than a Pandora’s Box? jipitec n.d.; 2. Casali, 2014, Risks of the new EU Data protection regulation: an ESMO position paper endorsed by the European oncology community, Ann Oncol, 25, 1458, 10.1093/annonc/mdu218 Breil, 2012, Multilingual medical data models in ODM format: a novel form-based approach to semantic interoperability between routine healthcare and clinical research, Appl Clin Inform, 3, 276, 10.4338/ACI-2012-03-RA-0011 Marcus, 2007, The Extensible Neuroimaging Archive Toolkit: an informatics platform for managing, exploring, and sharing neuroimaging data, Neuroinformatics, 5, 11, 10.1385/NI:5:1:11 Westberg, 2014, A DICOM based radiotherapy plan database for research collaboration and reporting, J Phys: Conf Ser, 489, 012100 Baumann, 2003, Towards genetic prediction of radiation responses: ESTRO’s GENEPI project, Radiother Oncol, 69, 121, 10.1016/j.radonc.2003.08.006 De Ruysscher, 2010, First report on the patient database for the identification of the genetic pathways involved in patients over-reacting to radiotherapy: GENEPI-II, Radiother Oncol, 97, 36, 10.1016/j.radonc.2010.03.012 Melidis, 2014, Radiation therapy quality assurance in clinical trials – Global Harmonisation Group, Radiother Oncol, 111, 327, 10.1016/j.radonc.2014.03.023 Efstathiou, 2013, Practice-based evidence to evidence-based practice: building the National Radiation Oncology Registry, J Oncol Pract, 9, e90, 10.1200/JOP.2013.001003 Meldolesi, 2014, An umbrella protocol for standardized data collection (SDC) in rectal cancer: a prospective uniform naming and procedure convention to support personalized medicine, Radiother Oncol, 5 CRF Harmonization and Standardization. https://wiki.nci.nih.gov/display/CRF/CRF+Harmonization+and+Standardization; 2014.