The OSSE Metadata Repository serves the harmonization of data content. For this purpose it contains a collection of metadata (definitions of data elements), which the registry compounds record in addition to the minimal data set for rare diseases, which is still contained. The more registries define their data elements in a comprehensible way and use identical data definitions, the easier it is to use the data for overarching questions. In defining the data elements, it is important that their meaning is described accurately and that existing data elements are used if possible.
Please be careful that you do not enter contents that break current law or third-party rights and be aware that the contents are visible and reusable for all registered OSSE users!