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000142120 0247_ $$2ISSN$$a0926-9630
000142120 0247_ $$2ISSN$$a1879-8365
000142120 0247_ $$2doi$$aDOI:10.3233/978-1-61499-896-9-209
000142120 037__ $$aDKFZ-2018-02350
000142120 041__ $$aeng
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000142120 1001_ $$aSchaaf, Jannik$$b0
000142120 245__ $$aOSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases.
000142120 260__ $$aAmsterdam$$bIOS Press$$c2018
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000142120 520__ $$aThe Open Source Registry for Rare Diseases (OSSE) provides a concept and a software for the management of registries for patients with rare diseases. A disease is defined as rare if less than 5 out of 10,000 people are affected. Up to date, approximately 6,000 rare diseases are catalogued. Networking and data exchange for research purposes remains challenging due to the paucity of interoperability and due to the fact that small data stocks are stored locally. The so called 'Findable, Accessible, Interoperable, Reusable' (FAIR) Data Principles have been developed to improve research in the field of rare diseases. Subsequently, the OSSE architecture was adapted to implement the FAIR Data Principles. Therefore, the so-called FAIR Data Point was integrated into OSSE to provide a description of metadata in a FAIR manner. OSSE relies on the existing metadata repository (MDR), which is used in to define data elements in the system. This is an important step towards unified documentation across multiple registries. The integration and use of new procedures to improve interoperability plays an important role in the context of registries for rare diseases.
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000142120 7001_ $$aKadioglu, Dennis$$b1
000142120 7001_ $$aGoebel, Jens$$b2
000142120 7001_ $$aBehrendt, Christian-Alexander$$b3
000142120 7001_ $$aRoos, Marco$$b4
000142120 7001_ $$avan Enckevort, David$$b5
000142120 7001_ $$0P:(DE-He78)28406352f67b7b6d43b303a4e955147a$$aÜckert, Frank$$b6
000142120 7001_ $$0P:(DE-He78)93df25d57a5110d3c80fd7f992a15770$$aSadiku, Fatlume$$b7$$udkfz
000142120 7001_ $$aWagner, Thomas O F$$b8
000142120 7001_ $$aStorf, Holger$$b9
000142120 773__ $$0PERI:(DE-600)1088535-3$$aDOI:10.3233/978-1-61499-896-9-209$$gVol. 253$$p209-213$$tStudies in health technology and informatics$$v253$$x0926-9630$$y2018
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