The Common Data Elements for Cancer Research: Remarks on Functions and Structure

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Abstract
Objectives: The National Cancer Institute (NCI) has developed the Common Data Elements (CDE) to serve as a controlled vocabulary of data descriptors for cancer research, to facilitate data interchange and inter-oper-ability between cancer research centers. We evaluated CDE’s structure to see whether it could represent the elements necessary to support its intended purpose, and whether it could prevent errors and inconsistencies from being accidentally introduced. We also performed automated checks for certain types of content errors that provided a rough measure of curation quality. Methods: Evaluation was performed on CDE content downloaded via the NCI’s CDE Browser, and transformed into relational database form. Evaluation was performed under three categories: 1) compatibility with the ISO/IEC 11179 metadata model, on which CDE structure is based, 2) features necessary for controlled vocabulary support, and 3) support for a stated NCI goal, set up of data collection forms for cancer research. Results: Various limitations were identified both with respect to content (inconsistency, insufficient definition of elements, redundancy) as well as structure – particularly the need for term and relationship support, as well as the need for metadata supporting the explicit representation of electronic forms that utilize sets of common data elements. Conclusions: While there are numerous positive aspects to the CDE effort, there is considerable opportunity for improvement. Our recommendations include review of existing content by diverse experts in the cancer community; integration with the NCI thesaurus to take advantage of the latter’s links to nationally used controlled vocabularies, and various schema enhancements required for electronic form support.