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Bridging Documentation and Metadata Standards: Experiences from a Funding Initiative for Registries

Within a funding initiative for patient registries in Germany, data specifications from 15 projects were collected in a structured format. Subsequently, the data specifications were transferred into a structure following the ISO/IEC 11179-3 standard for metadata registries. The data specifications included a median of 16 documentation objects and 196 data elements per project. Only Common designations were used. The bridging to ISO/IEC 11179-3 revealed several overlaps between the specifications. For example, bridging can be used to align the multifold designations of sex and sex categories as well as to harmonize the respective value lists. Further work intends to create a metadata repository based on a community-driven approach as part of the IT-infrastructure of this funding initiative. Without this infrastructure, comparability of the data specifications is unlikely.