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Selecting, Packaging, and Granting Access for Sharing Study Data

dc.contributor.authorKirsten, Toralf
dc.contributor.authorKiel, Alexander
dc.contributor.authorWagner, Jonas
dc.contributor.authorRühle, Mathias
dc.contributor.authorLöffler, Markus
dc.contributor.editorEibl, Maximilian
dc.contributor.editorGaedke, Martin
dc.date.accessioned2017-08-28T23:47:03Z
dc.date.available2017-08-28T23:47:03Z
dc.date.issued2017
dc.description.abstractData in medical studies and research projects are captured, curated and analyzed, often, with a substantial personal and financial effort. Such study data are typically managed by institutions and groups who are involved in these studies and projects. Often, they are refrained by these institutions and, thus, not shared with other scientists who are interested in similar medical topics or hypotheses. Open the data for other scientists will speed up medical insights, enable analyzes which currently lacks data amount either by enlarge the set size of study objects and by finding suitable controls, and allow to validate published results taking data from other studies into account. In this paper, we introduce the data sharing approach we use at the LIFE Research Center for Civilization Diseases, University Leipzig. Our approach is influenced by the OAIS reference model for archiving and distributing data to a designated community. We highlight several aspects of this approach, sketch the process and describe the supporting IT infrastructure. In particular, we outline the LIFE Data Portal and the LIFE Proposal Manager allowing to find, access, and reuse metadata and study data for dedicated analysis projects.en
dc.identifier.doi10.18420/in2017_138
dc.identifier.isbn978-3-88579-669-5
dc.identifier.pissn1617-5468
dc.language.isoen
dc.publisherGesellschaft für Informatik, Bonn
dc.relation.ispartofINFORMATIK 2017
dc.relation.ispartofseriesLecture Notes in Informatics (LNI) - Proceedings, Volume P-275
dc.subjectData Sharing
dc.subjectAccessing Study Data
dc.subjectLIFE
dc.titleSelecting, Packaging, and Granting Access for Sharing Study Dataen
gi.citation.endPage1392
gi.citation.startPage1381
gi.conference.date25.-29. September 2017
gi.conference.locationChemnitz
gi.conference.sessiontitleFDM2017 – Digitale Prozesse und Informationssysteme im Forschungsdatenmanagement

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