title: A reference data model of a metadata registry preserving semantics and representations of data elements.
abstract: Integration and analysis of clinical data collected in multiple data sources over a long period of time is a major challenge even when data warehouses and metadata registries are used. Since most metadata registries focus on describing data elements to establish domain consistent data definition and providing item libraries, hierarchical and temporal dependencies cannot be mapped. Therefore we developed and validated a reference data model, based on ISO/IEC 11179, which allows revision and branching control of conceptually similar data elements with heterogeneous definitions and representations.
authors.affiliation: Institute of Medical Biometry and Informatics, Heidelberg University, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Löpprich
authors.affiliation: Institute of Medical Biometry and Informatics, Heidelberg University, Germany.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Jones
authors.affiliation: Department of Internal Medicine, Division of Hematology/Oncology/Rheumatology, Heidelberg University Hospital, Germany.
authors.forename: Marie-Claire
authors.initials: MC
authors.lastname: Meinecke
authors.affiliation: Department of Internal Medicine, Division of Hematology/Oncology/Rheumatology, Heidelberg University Hospital, Germany.
authors.forename: Hartmut
authors.initials: H
authors.lastname: Goldschmidt
authors.affiliation: Institute of Medical Biometry and Informatics, Heidelberg University, Germany.
authors.forename: Petra
authors.initials: P
authors.lastname: Knaup
mesh_terms: D057286:Electronic Health Records / Q000592:standards*; D017408:Guidelines as Topic; D038622:Internationality; D008498:Medical Record Linkage / Q000592:standards*; D015201:Meta-Analysis as Topic; D008962:Models, Theoretical; D009323:Natural Language Processing; D012016:Reference Values; D012042:Registries / Q000592:standards*; D012660:Semantics; D018875:Vocabulary, Controlled