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Overview

Welcome to the Cancer Data Standards Registry and Repository (caDSR) Content Wiki. Here you will find the information on the guidelines and processes for creating, harmonizing and standardizing metadata in the caDSR.

The National Cancer Institute (NCI) maintains and administers metadata in the form of data elements, forms, models, and components of these items in a metadata registry referred to as the Cancer Data Standards Registry and Repository, or caDSR. The NCI serves as the registration authority for all items in the caDSR, and as such has a Registration Authority Identifier (RAI) 2.16.840.1.113883.3.26.2.  This organization identifier, or OID, is registered with HL7.  Per ISO/IEC 11179, the RAI is part of a globally unique identifier know as the IRDI (International Registration Data Identifier),  which uniquely identifies all content.   The 11179-6 RDI is the caDSR OID + Item public Id + item version, and item with public id = 2181292, version = 1.1 would have an IRDI = 2.16.840.1.113883.3.26.2 + 2181292 + 1.1.

caDSR Content Team

Mission Statement (effective: 4/19/2010)

A variety of NCI organizations and partners develop and maintain the content contained in the caDSR. These owning organizations are referred to as 'Contexts'. A Context is an organizational division within an ISO/IEC 11179 model. A Context may represent a business unit or some other content division that is responsible for creating and managing Administered Items either in which they originated or are used.

The caDSR Content Team is a group of trained curators who support development of content for the Context organizations.  The content team includes Context Administrators, Curators, Subject Matter Experts, and UML Model Owners:

  • Context administrators provide oversight, and curatorial approval, with final authority within their domain(s).
  • Curators create, register, and maintain metadata.
  • Subject Matter Experts respond to requests by the metadata curator or submitters providing special knowledge and/or expertise of the content, e.g., supply definitions, define permissible value sets, and verify the use of concepts needed to annotate the variable.
  • UML model owners search for, analyze metadata needs and usage, and register data elements contained in information models.

Members of the caDSR Content Team participate in regular meetings to discuss, review, and develop strategies for Best Practices, and how to best develop and share descriptive metadata based upon business requirements. Overall content administration is supplied through an NCI CBIIT Content Team member who is responsible for a level of consistent practice in the development/ maintenance approach to all caDSR content.
The mission of the caDSR Content Team is to collaboratively:

  • Lead the user community in development of well-formed descriptive metadata;
  • Guide the maintenance and harmonization of caDSR content to reduce redundancy;
  • Develop business rules and best practices to promote the use of a common approach to metadata development across communities;
  • Recommend curation methodologies and strategies to the curator community;
  • Document use cases for tooling enhancements to support the curator community;
  • Promote and support the development and implementation of data standards.

Content Team Meetings

Content Team meetings are held monthly to discuss topics related to caDSR content, including the identification of subject areas for standardization, development of CDEs and supporting documentation, documentation of business rules and best practices for the development and recording of metadata, and harmonization of caDSR content. The minutes of these meetings are posted for review. To improve the quality of content in the caDSR, the Content Team addresses incomplete, inconsistent, and redundant metadata in the caDSR. Quality is improved by analyzing caDSR content, collecting metrics , maintaining metadata, and establishing best practices and business rules to prevent data quality problems in the future.

caDSR Content Development

A goal of the Cancer Data Standards Registry and Repository (caDSR) is to define a comprehensive set of standardized metadata descriptors for cancer research data, for both information collection and analysis. The caDSR suite of tools enable users to create, locate, and use the metadata to support collecting, finding, and understanding research data.  The content in the caDSR was developed by registering 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.

Best Practices

Business Rules

  • caDSR Metadata Development Business Rules - Pertain both to the creation and development of Data Elements, Value Domains and other Administered Items, as well as to the management and review of case report forms (CRFs). 

caDSR Context Administrators and Curator Contacts

Content Maintenance

Data Standardardization and Harmonization

Training

 

 

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