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ISO 11179

H Ulrich, J Kern, D Tas, A K Kock-Schoppenhauer, F Ückert, J Ingenerf, M Lablans
BACKGROUND: Heterogeneous healthcare instance data can hardly be integrated without harmonizing its schema-level metadata. Many medical research projects and organizations use metadata repositories to edit, store and reuse data elements. However, existing metadata repositories differ regarding software implementation and have shortcomings when it comes to exchanging metadata. This work aims to define a uniform interface with a technical interlingua between the different MDR implementations in order to enable and facilitate the exchange of metadata, to query over distributed systems and to promote cooperation...
March 18, 2019: BMC Medical Informatics and Decision Making
Ann-Kristin Kock-Schoppenhauer, Hannes Ulrich, Stefanie Wagen-Zink, Petra Duhm-Harbeck, Josef Ingenerf, Philipp Neuhaus, Martin Dugas, Philipp Bruland
The establishment of a digital healthcare system is a national and community task. The Federal Ministry of Education and Research in Germany is providing funding for consortia consisting of university hospitals among others participating in the "Medical Informatics Initiative". Exchange of medical data between research institutions necessitates a place where meta information for this data is made accessible. Within these consortia different metadata registry solutions were chosen. To promote interoperability between these solutions, we have examined whether the portal of Medical Data Models is eligible for managing and communicating metadata and relevant information across different data integration centres of the Medical Informatics Initiative and beyond...
2018: Studies in Health Technology and Informatics
Holger Storf, Jannik Schaaf, Dennis Kadioglu, Jens Göbel, Thomas O F Wagner, Frank Ückert
Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard...
May 2017: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
Martin Dugas
BACKGROUND: Clinical trials use many case report forms (CRFs) per patient. Because of the astronomical number of potential CRFs, data element re-use at the design stage is attractive to foster compatibility of data from different trials. The objective of this work is to assess the technical feasibility of a CRF editor with connection to a public metadata registry (MDR) to support data element re-use. RESULTS: Based on the Medical Data Models portal, an ISO/IEC 11179-compliant MDR was implemented and connected to a web-based CRF editor...
November 29, 2016: Trials
Yu Rang Park, Jae-Jung Kim, Young Jo Yoon, Young-Kwang Yoon, Ha Yeong Koo, Young Mi Hong, Gi Young Jang, Soo-Yong Shin, Jong-Keuk Lee
Kawasaki disease (KD) is a rare disease that occurs predominantly in infants and young children. To identify KD susceptibility genes and to develop a diagnostic test, a specific therapy, or prevention method, collecting KD patients' clinical and genomic data is one of the major issues. For this purpose, Kawasaki Disease Database (KDD) was developed based on the efforts of Korean Kawasaki Disease Genetics Consortium (KKDGC). KDD is a collection of 1292 clinical data and genomic samples of 1283 patients from 13 KKDGC-participating hospitals...
July 2016: Database: the Journal of Biological Databases and Curation
Hannes Ulrich, Ann-Kristin Kock, Petra Duhm-Harbeck, Jens K Habermann, Josef Ingenerf
Unreconciled data structures and formats are a common obstacle to the urgently required sharing and reuse of data within healthcare and medical research. Within the North German Tumor Bank of Colorectal Cancer, clinical and sample data, based on a harmonized data set, is collected and can be pooled by using a hospital-integrated Research Data Management System supporting biobank and study management. Adding further partners who are not using the core data set requires manual adaptations and mapping of data elements...
2016: Studies in Health Technology and Informatics
Denise B Warzel, Dianne M Reeves
No abstract text is available yet for this article.
July 2016: Journal of AHIMA
Guoqian Jiang, Richard C Kiefer, Luke V Rasmussen, Harold R Solbrig, Huan Mo, Jennifer A Pacheco, Jie Xu, Enid Montague, William K Thompson, Joshua C Denny, Christopher G Chute, Jyotishman Pathak
The Quality Data Model (QDM) is an information model developed by the National Quality Forum for representing electronic health record (EHR)-based electronic clinical quality measures (eCQMs). In conjunction with the HL7 Health Quality Measures Format (HQMF), QDM contains core elements that make it a promising model for representing EHR-driven phenotype algorithms for clinical research. However, the current QDM specification is available only as descriptive documents suitable for human readability and interpretation, but not for machine consumption...
August 2016: Journal of Biomedical Informatics
Marco Schweitzer, Stefan Oberbichler
BACKGROUND: Electronic case report forms (eCRF) play a key role in medical studies and medical data registries (MDR) for clinical research. The creation of suitable eCRFs is a challenging and yet a very individual task. OBJECTIVES: We plan to create evidence-based templates for eCRFs which are aligned with existing studies or MDRs. METHODS: In this paper we investigated existing standards for eCRFs, defined uses cases and derived requirements needed to identify and annotate data items and pertinent information within study protocols, literature or patient cases...
2016: Studies in Health Technology and Informatics
Guoqian Jiang, Harold R Solbrig, Eric Prud'hommeaux, Cui Tao, Chunhua Weng, Christopher G Chute
Domain-specific common data elements (CDEs) are emerging as an effective approach to standards-based clinical research data storage and retrieval. A limiting factor, however, is the lack of robust automated quality assurance (QA) tools for the CDEs in clinical study domains. The objectives of the present study are to prototype and evaluate a QA tool for the study of cancer CDEs using a post-coordination approach. The study starts by integrating the NCI caDSR CDEs and The Cancer Genome Atlas (TCGA) data dictionaries in a single Resource Description Framework (RDF) data store...
2015: AMIA ... Annual Symposium Proceedings
Christel Daniel, Anil Sinaci, David Ouagne, Eric Sadou, Gunnar Declerck, Dipak Kalra, Jean Charlet, Kerstin Forsberg, Landen Bain, Charlie Mead, Sajjad Hussain, Gokce B Laleci Erturkmen
Integration profiles collaboratively developed by CDISC and IHE for integrating data from Electronic Health Records (EHRs) with clinical research and pharmacovigilance are limited to resolving lexical/syntactic data integration issues and do not address semantic barriers. This paper describes the collaboration between two European projects - EHR4CR and SALUS - in implementing ISO/IEC 11179-based metadata registries (MDRs) and semantically integrated cross-platform data access. A common "semantic MDR" provides a framework for bidirectional/cross-MDR mapping and federated queries are enabled using the newly-defined IHE Data Exchange (DEX) profile...
2014: AMIA Summits on Translational Science Proceedings
Senator Jeong, Hye Hyeon Kim, Yu Rang Park, Ju Han Kim
OBJECTIVES: Classification of data elements (DEs), which is used in clinical documents is challenging, even in across ISO/IEC 11179 compliant clinical metadata registries (MDRs) due to no existence of reliable standard for identifying DEs. We suggest the Clinical Data Element Ontology (CDEO) for unified indexing and retrieval of DEs across MDRs. METHODS: The CDEO was developed through harmonization of existing clinical document models and empirical analysis of MDRs...
October 2014: Healthcare Informatics Research
Martin Löpprich, Jennifer Jones, Marie-Claire Meinecke, Hartmut Goldschmidt, Petra Knaup
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...
2014: Studies in Health Technology and Informatics
Ho Suk Ku, Sungho Kim, HyeHyeon Kim, Hee-Joon Chung, Yu Rang Park, Ju Han Kim
OBJECTIVES: Health Avatar Beans was for the management of chronic kidney disease and end-stage renal disease (ESRD). This article is about the DialysisNet system in Health Avatar Beans for the seamless management of ESRD based on the personal health record. METHODS: For hemodialysis data modeling, we identified common data elements for hemodialysis information (CDEHI). We used ASTM continuity of care record (CCR) and ISO/IEC 11179 for the compliance method with a standard model for the CDEHI...
April 2014: Healthcare Informatics Research
Yu Rang Park, Young Jo Yoon, Hye Hyeon Kim, Ju Han Kim
Achieving semantic interoperability is critical for biomedical data sharing between individuals, organizations and systems. The ISO/IEC 11179 MetaData Registry (MDR) standard has been recognized as one of the solutions for this purpose. The standard model, however, is limited. Representing concepts consist of two or more values, for instance, are not allowed including blood pressure with systolic and diastolic values. We addressed the structural limitations of ISO/IEC 11179 by an integrated metadata object model in our previous research...
2013: Studies in Health Technology and Informatics
A Anil Sinaci, Gokce B Laleci Erturkmen
In order to enable secondary use of Electronic Health Records (EHRs) by bridging the interoperability gap between clinical care and research domains, in this paper, a unified methodology and the supporting framework is introduced which brings together the power of metadata registries (MDR) and semantic web technologies. We introduce a federated semantic metadata registry framework by extending the ISO/IEC 11179 standard, and enable integration of data element registries through Linked Open Data (LOD) principles where each Common Data Element (CDE) can be uniquely referenced, queried and processed to enable the syntactic and semantic interoperability...
October 2013: Journal of Biomedical Informatics
Sylvie M N Ngouongo, Matthias Löbe, Jürgen Stausberg
In order to support empirical medical research concerning reuse and improvement of the expressiveness of study data and hence promote syntactic as well as semantic interoperability, services are required for the maintenance of data element collections. As part of the project for the implementation of a German metadata repository for empirical research we assessed the ability of ISO/IEC 11179 "Information technology - Metadata registries (MDR)" part 3 edition 3 Final Committee Draft "Registry metamodel and basic attributes" to represent healthcare standards...
April 2013: Journal of Biomedical Informatics
Sylvie Mn Ngouongo, Jürgen Stausberg
The relevance of controlled vocabularies in promoting the standardized representation and exchange of clinical data is no longer to be proved. As part of a national project we evaluated the integration of classifications and terminologies in metadata registries based on the standard ISO/IEC 11179 Information technology - Metadata Registries (MDR). To overcome integration and maintenance tasks of monohierarchical classifications in the MDR, and to provide an exchange format between classifications publishers and the MDR, we implemented an import interface based on the Classification Markup Language (ClaML)...
2012: Studies in Health Technology and Informatics
Oliver Lyttleton, Alexander Wright, Darren Treanor, Paul Lewis
BACKGROUND: The Tissue Microarray Data Exchange Specification (TMA DES) is an XML specification for encoding TMA experiment data. While TMA DES data is encoded in XML, the files that describe its syntax, structure, and semantics are not. The DTD format is used to describe the syntax and structure of TMA DES, and the ISO 11179 format is used to define the semantics of TMA DES. However, XML Schema can be used in place of DTDs, and another XML encoded format, RDF, can be used in place of ISO 11179...
2011: Journal of Pathology Informatics
Sylvie Mn Ngouongo, Jürgen Stausberg
Empirical medical research needs services for the maintenance of item collections. We evaluated the appropriateness of ISO/IEC 11179 "Information technology - Metadata Registries (MDR)" part 3 "Registry Metamodel and basic attributes" for a national MDR. In particular, possibilities of including classifications and terminologies (summarized as vocabularies) using the metamodel of this standard were assessed. The hierarchical structure of classifications and terminologies could be mapped easily to ISO's metamodel...
2011: Studies in Health Technology and Informatics
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