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

Radiotherapy and Oncology

Volumn 113, Issue 3, 2014, Pages 303-309

  Skripcak, Tomas ^a   Belka, Claus ^a   Bosch, Walter ^b   Brink, Carsten ^c,w   Brunner, Thomas ^a   Budach, Volker ^a   Büttner, Daniel ^a   Debus, Jürgen ^a   Dekker, Andre ^d   Grau, Cai ^e   Gulliford, Sarah ^f   Hurkmans, Coen ^g,h   Just, Uwe ⁱ   Krause, Mechthild ^a,i,j   Lambin, Philippe ^d   Langendijk, Johannes A ^k   Lewensohn, Rolf ^l   Lühr, Armin ^a,i   Maingon, Philippe ^h,l   Masucci, Michele ^m   Niyazi, Maximilian ^a   Poortmans, Philip ⁿ   Simon, Monique ^a   Schmidberger, Heinz ^o   Spezi, Emiliano ^p   Stuschke, Martin ^a   Valentini, Vincenzo ^q   Verheij, Marcel ^r   Whitfield, Gillian ^s   Zackrisson, Björn ^t   Zips, Daniel ^a,u,v   Baumann, Michael ^a,i,j   more..

^a GERMAN CANCER RESEARCH CENTER DKFZ   (Germany)

^b WASHINGTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c ODENSE UNIVERSITY HOSPITAL   (Denmark)

^d MAASTRICHT UNIVERSITY   (Netherlands)

^e AARHUS UNIVERSITY HOSPITAL   (Denmark)

^f INSTITUTE OF CANCER RESEARCH   (United Kingdom)

^g CATHARINA HOSPITAL   (Netherlands)

^h EORTC DATA CENTER   (Belgium)

ⁱ UNIVERSITY HOSPITAL CARL GUSTAV CARUS   (Germany)

^j INSTITUTE OF ION BEAM PHYSICS AND MATERIALS RESEARCH   (Germany)

^k UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^l CENTRE GEORGES FRANÇOIS LECLERC   (France)

^m KAROLINSKA INSTITUTE   (Sweden)

ⁿ RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^o UNIVERSITY MEDICAL CENTER MAINZ   (Germany)

^p VELINDRE CANCER CENTRE   (United Kingdom)

^q CATHOLIC UNIVERSITY   (Italy)

^r NETHERLANDS CANCER INSTITUTE   (Netherlands)

^s UNIVERSITY OF MANCHESTER   (United Kingdom)

^t UMEÅ UNIVERSITY   (Sweden)

^u UNIVERSITY HOSPITAL TÜBINGEN   (Germany)

^v Velindre Cancer Centre ^*  (Netherlands)

^w UNIVERSITY OF SOUTHERN DENMARK   (Denmark)

more..

Author keywords

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

Indexed keywords

CANCER RADIOTHERAPY; CANCER RESEARCH; CASE REPORT FORM; DATA BASE; DATA PROCESSING; ELECTRONIC MEDICAL RECORD; HUMAN; MEDICAL RECORD; REVIEW; DATA MINING; FACTUAL DATABASE; INFORMATION DISSEMINATION; INFORMATION PROCESSING; INTERNATIONAL COOPERATION; MEDICAL RESEARCH; METHODOLOGY; NEOPLASMS; ORGANIZATION AND MANAGEMENT; PROCEDURES;

BIOMEDICAL RESEARCH; DATA COLLECTION; DATA MINING; DATABASES, FACTUAL; ELECTRONIC HEALTH RECORDS; HUMANS; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; NEOPLASMS; RESEARCH DESIGN;

EID: 84916203454     PISSN: 01678140     EISSN: 18790887     Source Type: Journal    
DOI: 10.1016/j.radonc.2014.10.001     Document Type: Review

References (30)

1. E. Roelofs, L. Persoon, S. Nijsten, W. Wiessler, A. Dekker, and P. Lambin Benefits of a clinical data warehouse with data mining tools to collect data for a radiotherapy trial Radiother Oncol 108 2013 174 179
2. P. Lambin, R.G.P.M. van Stiphout, M.H.W. Starmans, E. Rios-Velazquez, G. Nalbantov, and H.J.W.L. Aerts Predicting outcomes in radiation oncology - multifactorial decision support systems Nat Rev Clin Oncol 10 2012 27 40
3. H.J.W.L. Aerts, E.R. Velazquez, R.T.H. Leijenaar, C. Parmar, P. Grossmann, and S. Cavalho Decoding tumour phenotype by noninvasive imaging using a quantitative radiomics approach Nat Commun 5 2014
4. B. Reymen, A. van Baardwijk, R. Wanders, J. Borger, A.-M.C. Dingemans, and G. Bootsma 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 2014 482 487
5. D. Stacey, F. Légaré, N.F. Col, C.L. Bennett, M.J. Barry, and K.B. Eden Decision aids for people facing health treatment or screening decisions Cochrane Database Syst Rev 1 2014 CD001431
6. E. Roelofs, M. Engelsman, C. Rasch, L. Persoon, S. Qamhiyeh, and D. de Ruysscher 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 2012 165 176
7. E. Roelofs, L. Persoon, S. Qamhiyeh, F. Verhaegen, D. De Ruysscher, and M. Scholz Design of and technical challenges involved in a framework for multicentric radiotherapy treatment planning studies Radiother Oncol 97 2010 567 571
8. J.A. Langendijk, P. Lambin, D. De Ruysscher, J. Widder, M. Bos, and M. Verheij Selection of patients for radiotherapy with protons aiming at reduction of side effects: the model-based approach Radiother Oncol 107 2013 267 273
9. CDISC Share. https://www.cdisc.org/cdisc-share; 2014.
10. Data protection day 2014: full speed on eu data protection reform. https://www.europa.eu/rapid/press-release-MEMO-14-60-en.htm.
11. E. Roelofs, A. Dekker, E. Meldolesi, R.G.P.M. van Stiphout, V. Valentini, and P. Lambin International data-sharing for radiotherapy research: an open-source based infrastructure for multicentric clinical data mining Radiother Oncol 110 2014 370 374
12. Integrating the Healthcare Enterprise. https://www.ihe.net; 2014.
13. P. Lambin, E. Roelofs, B. Reymen, E.R. Velazquez, J. Buijsen, and C.M.L. Zegers Rapid learning health care in oncology - an approach towards decision support systems enabling customised radiotherapy Radiother Oncol 109 2013 159 164
14. Biomedical Research Integrated Domain Group. https://bridgmodel.nci.nih.gov; 2014.
15. de Montjoie J. Introducing the CDISC Standards: New Efficiencies for Medical Research. CDISC. https://www.cdisc.org; 2009.
16. Health Level Seven International. https://www.hl7.org; 2014.
17. J. Martin, J. Frantzis, P. Chung, I. Langah, M. Crain, and D. Cornes Prostate radiotherapy clinical trial quality assurance: how real should real time review be? (A TROG-OCOG Intergroup Project) Radiother Oncol 107 2013 333 338
18. Data protection legislation. https://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Data-protection-legislation/index.htm; 2014
19. 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.
20. Weber R. The right to be forgotten more than a Pandora's Box? jipitec n.d.; 2.
21. PG Casali Risks of the new EU Data protection regulation: an ESMO position paper endorsed by the European oncology community on behalf of the European Society for Medical Oncology (ESMO) Switzerland Ann Oncol 25 2014 1458 1461
22. B. Breil, J. Kenneweg, F. Fritz, P. Bruland, D. Doods, and B. Trinczek 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 2012 276 289
23. D.S. Marcus, T.R. Olsen, M. Ramaratnam, and R.L. Buckner The Extensible Neuroimaging Archive Toolkit: an informatics platform for managing, exploring, and sharing neuroimaging data Neuroinformatics 5 2007 11 34
24. J. Westberg, S. Krogh, C. Brink, and I.R. Vogelius A DICOM based radiotherapy plan database for research collaboration and reporting J Phys: Conf Ser 489 2014 012100
25. M. Baumann, T. Hölscher, and A.C. Begg Towards genetic prediction of radiation responses: ESTRO's GENEPI project Radiother Oncol 69 2003 121 125
26. D. De Ruysscher, D. Severin, E. Barnes, M. Baumann, R. Bristow, and V. Grégoire 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 2010 36 39
27. C. Melidis, W.R. Bosch, J. Izewska, E. Fidarova, E. Zubizarreta, and S. Ishikura Radiation therapy quality assurance in clinical trials - Global Harmonisation Group Radiother Oncol 111 2014 327 329
28. J.A. Efstathiou, D.S. Nassif, T.R. McNutt, C.B. Bogardus, W. Bosch, and J. Carlin Practice-based evidence to evidence-based practice: building the National Radiation Oncology Registry J Oncol Pract 9 2013 e90 e95
29. E. Meldolesi, J. van Soest, N. Dinapoli, A. Dekker, A. Damiani, and M.A. Gambacorta 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 2014
30. CRF Harmonization and Standardization. https://wiki.nci.nih.gov/display/CRF/CRF+Harmonization+and+Standardization; 2014.