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The Nordic Common Data Elements: An multi-lingual implementation of 11179 using the caDSR software suite

þóra Jónsdóttir
The Icelandic Cancer Center for Research and Development

The aim of this presentation is to report our experience in the set-up, learning and use of the open software suite Cancer Data Standards Repository (caDSR), developed by the National Cancer Institute’s (NCI) Center for Bioinformatics, NCICB in USA . The caDSR is a metadata repository including Common Data Elements (CDE) used by various NCI-sponsored organizations. The software consists of five main tools i.e. the CDE browser, the Curator tool, the Administrator tool, the Sentinel tool and the Unified modeling language (UML) browser. All utilize a registry of data elements, housed in an Oracle database. The object of this work is to develop a metadata database for medical data elements, referred to as the Nordic Common Data Element Project (NCDEP) and in so doing establishing common classification of data elements used in daily clinical praxis and in clinical trials. By collecting existing, and prospective data in this manner an important metadata database should be established. The collected metadata will be available on a web site http://www.cde.is. The International Standard 11179, “Framework for the Specification and Standardization of Data Elements” is used as the metadata model. The project started by working with the first three tools of the caDSR. Our experience using the tools to define data elements for a pathological answer for breast cancer is reported and how we could use the tools and define alternative values and alternative definitions in our own language, Icelandic. The pathological answer has now been in use for almost a year at our hospital. The first 90 answers have been evaluated and the experience using them is reported. The current status of our project is reported, but recently we decided not to update our own implementation of the software and to start instead to use NCICB implementation and concentrate on the creation and harmonization of the Nordic Common Data elements, starting using English and Icelandic terms.

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