title: The eGenVar data management system--cataloguing and sharing sensitive data and metadata for the life sciences.
abstract: Systematic data management and controlled data sharing aim at increasing reproducibility, reducing redundancy in work, and providing a way to efficiently locate complementing or contradicting information. One method of achieving this is collecting data in a central repository or in a location that is part of a federated system and providing interfaces to the data. However, certain data, such as data from biobanks or clinical studies, may, for legal and privacy reasons, often not be stored in public repositories. Instead, we describe a metadata cataloguing system and a software suite for reporting the presence of data from the life sciences domain. The system stores three types of metadata: file information, file provenance and data lineage, and content descriptions. Our software suite includes both graphical and command line interfaces that allow users to report and tag files with these different metadata types. Importantly, the files remain in their original locations with their existing access-control mechanisms in place, while our system provides descriptions of their contents and relationships. Our system and software suite thereby provide a common framework for cataloguing and sharing both public and private data. Database URL: http://bigr.medisin.ntnu.no/data/eGenVar/.
authors.affiliation: Department of Cancer Research and Molecular Medicine, Norwegian University of Science and Technology, Prinsesse Kristinasgt. 1, NO-7491 Trondheim, Norway and Department of Computer and Information Science, Norwegian University of Science and Technology, Sem Sælands vei 9, NO-7491 Trondheim, Norway.
authors.forename: Sabry
authors.initials: S
authors.lastname: Razick
authors.forename: Rok
authors.initials: R
authors.lastname: Močnik
authors.forename: Laurent F
authors.initials: LF
authors.lastname: Thomas
authors.forename: Einar
authors.initials: E
authors.lastname: Ryeng
authors.forename: Finn
authors.initials: F
authors.lastname: Drabløs
authors.forename: Pål
authors.initials: P
authors.lastname: Sætrom
mesh_terms: D064229:Biological Ontologies; D001690:Biological Science Disciplines; D003628:Database Management Systems; D030541:Databases, Genetic; D033181:Information Dissemination; D057386:Search Engine; D012984:Software; D009626:Terminology as Topic