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dc.contributor.authorSTELL, ANTHONYen_US
dc.contributor.authorSINNOTT, RICHARDen_US
dc.contributor.authorDURAN, CHRISen_US
dc.date.accessioned2014-05-22T06:49:30Z
dc.date.available2014-05-22T06:49:30Z
dc.date.issued2012en_US
dc.identifier.citationStell, A., Sinnott, R. & Duran, C. (2012). A collaborative infrastructure supporting international adrenal cancer research. In eResearch Australasia: emPower eResearch, Sydney, Australia.en_US
dc.identifier.urihttp://hdl.handle.net/11343/32704
dc.descriptionThis is a paper from eResearch Australasia: emPower eResearch 2012. http://conference.eresearch.edu.auen_US
dc.description.abstractA wealth of information about adrenal cancer exists in many individual specialist centres around the world. The cancers themselves are very rare, often fatal and no common consensus on optimal treatment strategies exists, and certainly no treatments targeted to the individual genetic makeup of the tumours and individuals. In order to conduct effective and progressive research into these tumours and the surrounding conditions and treatments of individuals, it is essential to pool the expertise from specialist centres that exist in each country. The ENSAT-CANCER project is a 5-year European Union FP7-funded project tasked with this, through the development of an online environment that holds core data from a body of patients aligned with identified needs from leading specialists in the field. These data sets are also augmented with a host of tools and features that enable and support the research in this domain. This presentation will describe some of the novel features that have been developed in the project including biobank labelling and “match-making” services between centres. The presentation will also cover the hurdles involved in putting together such an enterprise – such as ethical approval for international data sharing and the establishment of canonical identification systems, and how these have been successfully overcome. The ENSAT-CANCER platform has now been used to support a portfolio of major international genetically targeted clinical trials and outcome studies. The presentation will describe the different processes involved in connecting and effectively sharing data and making best use of the ENSAT-CANCER platform. To date, the registry holds over 2900 patient cases and continues to grow every day.en_US
dc.languageengen_US
dc.subjectadrenal canceren_US
dc.subjectENSAT-CANCER projecten_US
dc.subjectdata setsen_US
dc.subjectbiobank labellingen_US
dc.subjectinternational data sharingen_US
dc.subjectcancer researchen_US
dc.titleA collaborative infrastructure supporting international adrenal cancer researchen_US
dc.typeConference Paperen_US
melbourne.peerreviewPeer Revieweden_US
melbourne.affiliationThe University of Melbourneen_US
melbourne.affiliation.departmentDepartment of Computing and Information Systemsen_US
melbourne.publication.statusPublisheden_US
melbourne.source.titleeResearch Australasia: emPower eResearchen_US
melbourne.source.locationconferenceSydney, Australiaen_US
dc.description.sourcedateconference28 October – 2 Novemberen_US
melbourne.elementsidNA
melbourne.contributor.authorSinnott, Richard
melbourne.contributor.authorStell, Anthony
melbourne.contributor.authorDURAN, CHRIS
melbourne.accessrightsOpen Access


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