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Comment: Uploaded caDSR Community Released CDEs as of July 1 2022.

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The NCI caDSR CDE Browser can be used to download collections of metadata describing data held in repositories for cancer research and clinical trials. There are currently no NCI Recommended CDEs for use other than the  CDEs marked as having a Registration Status of "Standard".  Any CDE in caDSR can be reused, but the ones marked "Standard" have been through a broader governance process. There communities within NCI who have agreed to use a set of CDEs for specific purposes, for example EDRN, TCGA, NCTN, and many others.  If you wish to collect data that is compatible with a specific group, you should begin by looking for the group's CDEs using the CDE Browser.  The Context name is an organizing principle for tree based navigation, and the "Advanced Search" provides a way to search for CDEs grouped by Classifications, or keywords.

Best Practices for creating CDEs  can be found here.

The caDSR Form Builder can be used to create, view and download the Case Report Forms (CRFs) designs.

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titleProduction CDEs
See Community Released Downloads to download production CDEs to Excel and XML and download DTDs from Github.

 Currently, CDEs can be downloaded in Excel or XML Format. CRFs can be downloaded in Excel format. 

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Attempting to download all the caDSR CDEs would result in a file size that is too large for a single MS Excel download, and currently forms can only be downloaded one form at a time.

Therefore, "canned", or pre-downloaded collections of all the NCI Standard CDEs, and "Released" CDEs, and CDEs by selected individual projects in is provided for your convenience.

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Download NCI Preferred Standard CDEs

The NCI Preferred Standard CDEs represent those that have been through the NCI's Content Owners Governance and have been determined to meet all the necessary criteria for standardization based on NCI Best Practices. When looking for NCI recommended CDEs, this is the place to start.  The attached files are for downloading, a web browser view for comparing or viewing details of these CDEs is available by visiting the CDE Browser and clicking on the "NCI Standards" Context, or by performing an Advanced Search, selecting Registration Status = "Preferred Standard".

Other reusable CDEs can be found by searching using the CDE Browser if you do not find CDEs in the Preferred Standard set that meet your needs.  The community standard CDEs have Registration Status = "Standard", and sort to the top of the search results by default, right after "Preferred Standard" For more information about Content development at NCI, see caDSR Content.

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Each question on a caDSR Form is generally backed by a caDSR CDE, though we do have some forms that were bulk loaded without CDEs. When a CDE is associated with a form it is visible in the Form Builder web application, and is present in the XML or Excel download. Since each CDE has been annotated with semantic concepts for the question and each valid value, you can use this information to compare data that may be been represented differently, or to explore deeper meaning by traversing to the NCI Thesaurus for synonyms, related concepts, and other semantic information about each concept. The concept information for each valid value is not in the XML or Excel download, but we can produce a CRF Data Dictionary which will contain the concepts for each question and valid value for any associated CDE. Please sent the CRF public ID and version number to the NCI App Support desk and ask that the caDSR team help you with this request.

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Currently, CDEs can be downloaded to Excel or XML Format. CRFs can be downloaded to Excel format. 

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CDEs as ExcelCDEs as XMLCRF as Excel
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titleDownloading Production CDEs
See Community Released Downloads to download production CDEs to Excel and XML  format and download DTDs from Github.

Attempting to download all the caDSR CDEs would result in a file size that is too large for a single MS Excel download, and currently forms can only be downloaded one form at a time.

Therefore, "canned", or pre-downloaded collections of all the NCI "Released" CDEs, and CDEs by selected individual projects in is provided for your convenience. The NCI Preferred Standards have become too large to download in a single file, so they can be extracted from the "Released" CDE files.

Note that NCI added an FTP site where all "Released" CDEs as XML.

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Community Released Downloads

Download caDSR Community Released CDEs

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If importing caDSR content from a download into another ISO/IEC 11179 or other similar CDE or CRF metadata registry, please add the caDSR Registration Authority Identifier (RAI) 2.16.840.1.113883.3.26.2 to the metadata to keep the caDSR content distinct from the local repository. Per ISO/IEC 11179, the RAI is part of a globally unique identifier known as the IRID (Item Registry Identifier), and uniquely identifies registry content as being related to particular registrars. The IRID for all caDSR content is the <caDSR OID + Item public Id + item version>. For example, if the caDSR item public id = 2181292, version = 1.1, when importing you would add the RAI, and the result would be an IRID = 2.16.840.1.113883.3.26.2 + 2181292 + 1.1.

 

 

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TCGA Phase II meta data elements (CDEs)

TCGA (The Cancer Genome Atlas) is a project funded by the National Cancer Institute (NCI) and National Human Genome Research Institute (NHGRI). A project overview can be found on the TCGA Home Page.

TCGA provides data element descriptions for the clinical data elements found in the TCGA data files.  The BCR on-line data dictionary displaying the essentials of the clinical CDEs as an HTML page is located here.  The files below contain all the caDSR metadata for these CDEs.  The HTML data dictionary was generated from the XML download of the TCGA CDEs. For more information or help creating your own HTML Data Dictionary from NCI registered CDEs, please contact the NCI Help Desk.

They are also available from the CDE Browser in the caBIG Context under the Classifications tab heading " TCGA 2.6 by Disease ".  New TCGA CDEs not yet in the BCR data dictionary can be found under the caBIG Classification "The Cancer Genome Atlas", sub-heading "New TCGA Data Elements"

Biomedical Research Integrated Domain Group (BRIDG) meta data elements (CDEs)

BRIDG is a model that was created by a collaborative effort engaging stakeholders from the Clinical Data Interchange Standards Consortium (CDISC), the HL7 BRIDG Work Group, the US National Cancer Institute (NCI), and the US Food and Drug Administration (FDA). A logical information model was developed to describe basic, pre-clinical, clinical, and translational research.  Please visit the BRIDG website for more information.

The CDEs in the BRIDG model are available from the CDE Browser in the BRIDG Context under the Classifications heading "Link to BRIDG 3.2", subheading "BRIDG 3.2". They have been downloaded and made available here for convenience.

 BRIDG 3.0.2 is also available in the Attachments section of this page and in the CDE Browser.

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North American Central Cancer Registries (NAACCR) meta data elements (CDEs)

NAACCR develops and promotes uniform data standards for cancer registration, and aggregates and publishes data from central cancer registries. It promotes the use of cancer surveillance data and systems for cancer control and epidemiological research. See their website for more information about NAACCR.

NCI has registered several versions of the NAACCR data elements as CDE metadata in caDSR for discovery and use by those wishing to utilize the NAACCR data, or create data repositories of compatible data.

The following versions of NAACCR have been recorded in caDSR, are available from the CDE Browser in the PS&CC Context under the Classifications tab heading "Division of Cancer Control and Population Sciences ". They have been downloaded and made available here for convenience.

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National Biomedical Imaging Archive (NBIA)(formerly NCIA)

The CDEs in the HINTS 2005 survey are available from the CDE Browser in the caBIG Context under the Classifications heading "NBIA". They have been downloaded and made available here for convenience.

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Surveillance, Epidemiology and End Results (SEER) meta data elements (CDEs)

The SEER program works to provide information on cancer statistics in an effort to reduce the burden of cancer among the U.S. population.  The data elements collected in cancer surveillance have been registered in the NCI caDSR, and are available from the CDE Browser in the PS&CC Context under the Classifications tab heading "caSEER", subheading " com.imsweb.caseer ". They have been downloaded and made available here for convenience.

Health Information National Trends Survey (HINTS2005)

The CDEs in the HINTS 2005 survey are available from the CDE Browser in the PS&CC Context under the Classifications heading "HINTS2005". They have been downloaded and made available here for convenience.

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Electronic Medical Records and Genomics (eMerge) Network CDEs       

The CDEs in the eMerge project are available from the CDE Browser in the caBIG Context under the Classifications heading "eMerge Data Variables". They have been downloaded and made available here for convenience.

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caDSR Wiki | caDSR Database and Tools | caDSR Documentation

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