The TCR cancer registry repository for annotating Cancer Data

Abstract

The huge amounts of biomedical data are stored in various formats and accessed through numerous interfaces. It is a crucial task for Data integration and exchange in cancer research. Data elements play an important role in data integration. The NCI supports a broad initiative to standardize the common data elements (CDEs) used in cancer research data capture and reporting. The Taiwan Cancer Registry (TCR), established in 1979, is organized and funded by the Health Department of the central government. The TCR's primary goal is to survey the incidence of cancer in Taiwan. The aim of the Taiwan Cancer Common Data Element Project (TCCDEP) is to facilitate convergence towards a common metadata standard in Taiwan cancer registry data. The project is implemented using a set of open source software and tools developed by the NCI, such as the caCORE SDK and caGrid. The experience of building, learning and using the open toolkit, Cancer Data Standards Repository (caDSR), developed by the National Cancer Institute's Center for Bioinformatics, NCICB, in the USA is reported. The caDSR is a metadata repository including CDEs used by NCI-sponsored organizations. The object of this work is to develop a database of metadata for medical data elements, referred to as the TCCDEP and to establish a common classification of data elements used in cancer registry. In this manuscript, we will be developing the common data elements using vocabulary standards, ontology and semantic modeling methodology. The CDEs included demographic data, clinical history, pathology data, and clinical outcome data including treatment, recurrence and vital status. These CDEs will be further enhanced to data sets across the participating cancer institutes to facilitate and supplement translational research. The Taiwan Cancer Registry (TCR) model and standard will be use as the basis for an electronic data standard repository to metadata or data descriptors. The TCCDEP developed 40 data elements to annotate the cancer registry data collected. In this project, we describe the process required to develop the model, the caDSR CDEs, and the results of the modeling effort. We address difficulties we encountered and modifications for solution. The caBIG (TM) grid project, gird model of Taiwan Cancer Registry (girdTCR), using the caCORE tools to define data elements for cancer registry has been shown to caBIG(TM)UML model project. Currently, the Taiwan cancer registry CDEs are released and available in CDE browser for reusing. Furthermore, we will extend our CDEs to daily clinical practice and trials, along with how the methods were used to fully implemented in hospitals and cancer research centers in Taiwan.