A goal of the Cancer Data Standards Registry (caDSR) program is to define a comprehensive set of standardized metadata descriptors for cancer research data for use in information collection and analysis.
Various NCI offices and partner organizations have developed the content of the caDSR by registration of data elements based on data standards, data collection forms, databases, clinical applications, data exchange formats, UML models, and vocabularies.
Based on the ISO/IEC 11179 model for metadata registration, information about names, definitions, permissible values, and semantic concepts for common data elements (CDEs) have been recorded. caDSR tools are available to create, locate, and use the metadata to support finding and understanding research data.
The metadata information in the caDSR is developed by groups or organizations divided into domain-specific work areas called Contexts. The current Contexts in the caDSR are listed below. Each Context has a Context Administrator listed as the main point of contact.
NCI Cancer Biomedical Informatics Grid (caBIG™) : George Komatsoulis
NCI Core Infrastructure (caCORE) : George Komatsoulis
NCI Center for Cancer Research (CCR) : Dianne Reeves
Clincal Data Interchange Standards Consortium (CDISC) : Mary Lenzen
NCI Cancer Imaging Program (CIP) : John Freymann
NCI Clinical Trial Evaluation Program (CTEP) : CDE Compliance Review Team To provide guidance to its constituents on the use of CDEs, CTEP has prepared an overview to its CDE development program.
NCI Division of Cancer Prevention (DCP) : NCI DCP CDE Team
NCI Early Detection Research Network (EDRN) : Greg Warnick
National Cancer Research Institute (UK) (NCRI) : George Komatsoulis
National Heart, Lung, and Blood Institute (NHLBI) : George Komatsoulis
National Institute of Dental and Craniofacial Research (NIDCR) : Alice Birnbaum
Population Sciences & Cancer Control (PC&CC) Peter Schad The data elements in this context are a collaboration between the NCI Division of Cancer Control and Population Science (DCCPS) : and NCI Division of Cancer Epidemiology and Genetics (DCEG) :
NCI Specialized Programs of Research Excellence (SPORES) : Dianne Reeves
A Context Curator for each group provides oversight for the creation, maintenance, and designation of CDEs within the Context. A list of contact information for Context Administrators and Context Curators is available.
caDSR Content Development
The Context Administrators meet every two weeks to discuss topics related to caDSR Content, including the documentation of business rules and best practices for the development and recording of metadata, harmonization of caDSR content, and adoption of data standards. The minutes of these meeting are posted for review.
Business Rules and Best Practices
The Context Administrators have agreed to Business Rules for the development of caDSR content. The rules outline best practices for creation, assignment of metadata statuses, and maintenance of the various metadata components.
Harmonization of caDSR Content
The Context Administrators work together to coordinate and harmonize metadata development efforts so common building blocks for data capture and reporting can be created. The goal is to ensure that shareable CDEs are not redundant across contexts and are based upon consensus of participating Contexts. To help minimize the redundancy and duplication of CDEs across Contexts, the Context Administrators encourage reuse, or designation, of existing CDEs by other Contexts. Often, an item is a candidate for reuse if minor edits can be made. If changes are needed to caDSR content, please contact the owning Context Curator .
caBIG™ NCI Data Standards
The NCI, together with its partners in the Cancer Biomedical Informatics Grid (caBIG™ ) community, is actively developing CDEs and standard vocabularies to be used as metadata descriptors for NCI-sponsored research and for caCORE/caBIG™ applications. The Context Administrators, in their biweekly meetings, identify subject areas for standardization, develop CDEs and supporting documentation, and present proposed data standards to the caBIG™ Vocabulary and Common Data Element Workgroup (VCDE ) for review. The caBIG™ Data Standards Development and Governance Model helps guide data standard development for the caBIG™/NCI community. The data standards that have been adopted and those currently under review may be seen on the caBIG™/NCI Data Standards page.
Metadata Development Training
Best practices training for caDSR metadata creation is available. The Training page provides a link to the training curriculum and instructions for enrollment in the classes offered.
Tools for caDSR Metadata Development
The caCORE User Applications Manual describes the caDSR Curation Tool, CDE Browser and Administration Tool. Step-by-step instructions guide the user through each of the major features of each tool including screen snapshots to aid user understanding. Classes for using the tools are also listed on the Training page.