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Metadata Needs and Support

The caDSR (Cancer Data Standards Registry and Repository) is a metadata repository based on the ISO/IEC 11179 Metadata Registry standard. It supports a broad community of users both inside and outside of NCI that have requirements to ensure the longevity and consistency of biomedical research data by registering metadata standards in caDSR.

What is a metadata standard? A metadata standard is a high level document which establishes a common way of structuring and understanding data, and includes principles and implementation issues for utilizing the standard. There are many metadata standards purposed for specific disciplines.

.  Content owners and end users have included include NCI and its partners in clinical trials, academic institutions (including NCI Designated Cancer Centers, SPOREs and NCTN/ETCTN), other NIH institutes (including NICHD, NHLBI, NCATS and NIDCR), other federal agencies (in particular the FDA), pharmaceutical companies, standards development organizations (e.g. CDISC) and a range of international biomedical organizations. For more information see the caDSR Collaborations and Use. 

Requirements from researchers and/or their supporting informatics groups drive the creation of metadata in the caDSR. Metadata content development usually starts with a request for assistance by a researcher planning clinical or research data collection. Metadata curators work with the user and EVS to identify appropriate vocabulary while identifying a mix of new and existing CDE content to support the scientific requirement. Curators always attempt to reuse existing metadata (where that content supports the scientific requirement) as a way to help scientists ensure the compatibility of their data with other data collected across the enterprise, and sometimes researchers request that their content be harmonized with specific existing projects.

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A note on the term “Common Data Element” (CDE). While originally intended to mean a data element that was reused across groups, the term has come to mean any description of a variable and its valid values. In this document, we will use the standard NCI version of this definition, which is to say a variable description (including valid values) described in the caDSR using its implementation of the ISO 11179 variable, regardless of whether the element in question has been used more than once.

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This Wiki Space

This is the wiki home page for the caDSR wiki space. You may edit pages if you are working on them with the authors. You are welcome to leave comments. This wiki space includes the following .

• caDSR Content
  Focuses on the Metadata Content within the caDSR and is most useful for consumers. The pages include Data Standards, Harmonization, Reuse and Business Rules that establish the capabilities of the caDSR Tools.

• caDSR Database and Tools
  Provides access to caDSR tools and links to the tool summary page for current user documentation and technical information like release notes.

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pages:

Documentation

For a complete list of current caDSR Tool user documentation, application guides, release notes, and FAQs, see the caDSR Documentation wiki page.

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How to Cite caDSR

To cite the NCI Semantic Infrastructure, use the following reference.

Komatsoulis, G.A., Warzel, D.B., Hartel, F.W., Shanbhag, K, Chilukuri, R, Fragoso, G., de Coronado, S, Reeves, D.M., Hadfield, J.B., Ludet, C., and P.A. Covitz (2007) "caCORE version 3: Implementation of a model driven, service-oriented architecture for semantic interoperability." Journal of Biomed Informatics. 2008 February; 41(1): 106--123. Published online 2007 April 2. doi: 10.1016/j.jbi.2007.03.009.

To cite the caDSR Form Builder OneData general software, use the following reference.  

NCI caDSR Form BuilderOneData. <https://formbuildercadsr.ncicancer.nih.gov/FormBuilderonedata/formSearchActionHome.dojsp> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013.

To cite a specific collection of forms in caDSR, or to cite caDSR CDEs in a particular collection or group, use a reference like the following. 

"[Protocol or Classification Scheme Name]." [Context name], [Node name], NCI caDSR Form BuilderOneData. <https://formbuildercadsr.nci.nih.govcancer.gov/onedata/Home.jsp> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013. 

Example: " CALGB: 10603 Treatment Form ." CTEP, Protocol Forms, NCI caDSR Form BuilderOneData. <https://formbuildercadsr.ncicancer.nih.gov> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013

To cite caDSR CDE Browser software, use a reference like the following.

NCI caDSR CDE Browser. <https://cdebrowser.nci.nih.gov> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013.

To cite caDSR CDEs in a particular collection or group, use a reference like the following.

"[Classification Scheme Name]." [Context name], [Node name], NCI caDSR CDE Browser. <https://cdebrowser.nci.nih.gov/onedata/Home.jsp> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013.

Example: "NAACCR 11.1." PS & CC (NCI Population Sciences & Cancer Control), Classifications, Division of Population Cancer Control and Population Sciences, NCI caDSR CDE BrowserOneData. <https://cdebrowsercadsr.nci.nih.govcancer.gov/onedata/Home.jsp> National Cancer Institute, Center for Biomedical Informatics and Information Technology, 01 Oct. 2010. Web. 17 Jan. 2013 .