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The cancer Data Standards Registry and Repository (caDSR) Governance supports the work of the National Cancer Institute (NCI), CBIIT, and integrates with ongoing efforts through the Office of the National Coordinator, Office of the Secretary, Department of Health and Human Services. The primary focus is coordination of nationwide efforts to implement and use health information technology and the electronic exchange of health information. A well-implemented governance policy supports management of metadata, any related financial resources and reduces risk associated with compliance, security, privacy, and data sharing.

caDSR Governance provides a framework outlining the ownership and accountability of the caDSR Stakeholders and Stewardship Organizations (SO) who store metadata content in the caDSR.  It aligns the existing caDSR management approach with the roles and responsibilities defined in International Standards Organization and the International Electrotechnical Commission (ISO/IEC 11179), the international metadata registry standard, and implements the full set of recommended ISO registration statuses.  Selection of Registration Status is based on Administered Item (AI) compliance with established business rules and is used to indicate AIs that meet quality guidelines and are recommended for preferential use by the community. Quality metadata is a powerful resource enabling consistency in collection, analysis, aggregation, discovery and reporting of data sets.

A shared management approach across organizations is used to manage and maintain the caDSR metadata.  The shared approach is necessary due to the sheer volume of metadata requiring management and maintenance while acknowledging that the subject matter expertise lies within each of the Stewardship Organizations (SO), or Contexts.  Levels of involvement, responsibility, and accountability of NCI and the Stakeholders varies at each level.  The Registration Status assigned to an AI is used to identify broadly reused and vetted metadata and signify that it has had appropriate management review. Broadly reused metadata may be within a single SO/Context or across multiple SO/Contexts. 

Governance LevelDetails
caDSR Governance
  • Oversight of all caDSR metadata, all registration statuses, by the caDSR Registration Authority (RA)
  • Centralized management and maintenance of Preferred Standards without implementation constraints
SO/Context Governance
  • SO/Context owned caDSR metadata that may contain context or program level constraints
  • Manage and maintain all metadata created by their organization
  • Manage and maintain SO/Context Standard and Qualified AIs with oversight by the caDSR RA for business rule compliance
Study specific Governance
  • SO/Context owned caDSR metadata that may contain study specific constraints
  • Manage and maintain study specific metadata with minimal oversight by the caDSR RA for compliance with business rules

At the highest governance level depicted above, the caDSR Registration Authority (RA) retains broad oversight for all caDSR metadata and provides centralized management and maintenance of metadata with a Registration Status of “Preferred Standard”.  At the middle governance level, the SO/Contexts retain management responsibility for metadata created by their group or organization.  Members of the NCI CBIIT curation team, referred to as Embedded Curators, are assigned to an SO/Context to assist the Steward/Context Administrator (CA) in the maintenance and review of broadly reused SO/Context metadata, assigning a registration status of “Standard” or “Qualified”.  At the lowest governance level, Study-specific metadata is managed and maintained by the SO/Context.  The NCI RA provides minimal oversight at this level since the content is study specific and rarely used outside of the owning SO/Context.

Any change requests to an AI with the Registration Status of “Preferred Standard”, “Standard” or “Qualified” should be sent to The Embedded Curator will work with the appropriate Stewards/CAs and, if necessary, the owning SO/Contexts to assess potential impacts to other caDSR content and users. The caDSR Content Team listserv (CADSR_USERS@LIST.NIH.GOV) and wiki ( are used to disseminate information on implemented changes.     

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