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@ARTICLE{Schaaf:142120,
      author       = {J. Schaaf and D. Kadioglu and J. Goebel and C.-A. Behrendt
                      and M. Roos and D. van Enckevort and F. Ückert$^*$ and F.
                      Sadiku$^*$ and T. O. F. Wagner and H. Storf},
      title        = {{OSSE} {G}oes {FAIR} - {I}mplementation of the {FAIR}
                      {D}ata {P}rinciples for an {O}pen-{S}ource {R}egistry for
                      {R}are {D}iseases.},
      journal      = {Studies in health technology and informatics},
      volume       = {253},
      issn         = {0926-9630},
      address      = {Amsterdam},
      publisher    = {IOS Press},
      reportid     = {DKFZ-2018-02350},
      pages        = {209-213},
      year         = {2018},
      abstract     = {The 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.},
      cin          = {G230},
      ddc          = {300},
      cid          = {I:(DE-He78)G230-20160331},
      pnm          = {317 - Translational cancer research (POF3-317)},
      pid          = {G:(DE-HGF)POF3-317},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:30147075},
      doi          = {DOI:10.3233/978-1-61499-896-9-209},
      url          = {https://inrepo02.dkfz.de/record/142120},
}