title: The National Institutes of Health's Biomedical Translational Research Information System (BTRIS): design, contents, functionality and experience to date.
abstract: The US National Institutes of Health (NIH) has developed the Biomedical Translational Research Information System (BTRIS) to support researchers' access to translational and clinical data. BTRIS includes a data repository, a set of programs for loading data from NIH electronic health records and research data management systems, an ontology for coding the disparate data with a single terminology, and a set of user interface tools that provide access to identified data from individual research studies and data across all studies from which individually identifiable data have been removed. This paper reports on unique design elements of the system, progress to date and user experience after five years of development and operation.
authors.affiliation: Laboratory for Informatics Development, NIH Clinical Center, Bethesda, MD, United States. Electronic address: ciminoj@mail.nih.gov.
authors.forename: James J
authors.initials: JJ
authors.lastname: Cimino
authors.affiliation: Laboratory for Informatics Development, NIH Clinical Center, Bethesda, MD, United States.
authors.forename: Elaine J
authors.initials: EJ
authors.lastname: Ayres
authors.affiliation: Laboratory for Informatics Development, NIH Clinical Center, Bethesda, MD, United States.
authors.forename: Lyubov
authors.initials: L
authors.lastname: Remennik
authors.affiliation: Computer Sciences Corporation, Falls Church, VA, United States.
authors.forename: Sachi
authors.initials: S
authors.lastname: Rath
authors.affiliation: Computer Sciences Corporation, Falls Church, VA, United States.
authors.forename: Robert
authors.initials: R
authors.lastname: Freedman
authors.affiliation: Computer Sciences Corporation, Falls Church, VA, United States.
authors.forename: Andrea
authors.initials: A
authors.lastname: Beri
authors.affiliation: Computer Sciences Corporation, Falls Church, VA, United States.
authors.forename: Yang
authors.initials: Y
authors.lastname: Chen
authors.affiliation: Laboratory for Informatics Development, NIH Clinical Center, Bethesda, MD, United States.
authors.forename: Vojtech
authors.initials: V
authors.lastname: Huser
mesh_terms: D064229:Biological Ontologies; D035843:Biomedical Research / Q000379:methods*; D003628:Database Management Systems; D057286:Electronic Health Records; D006801:Humans; D009316:National Institutes of Health (U.S.); D057170:Translational Research, Biomedical / Q000379:methods*; D014481:United States
keywords: Clinical research; Ontology; Research data repository; Research data warehouse; Translational research