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The Common Data Elements (CDE) Project is a multi-agency collaboration involving
the NINDS and other NIH Institutes, the Department of Health and Human Services
(HHS), federal agencies, not-for-profit organizations, foundations, various national
/ international organizations, as well as members of the scientific community at
large. To date, the NINDS has worked collaboratively in the development and distribution
of CDEs by:
- Expediting the release of standards in the NINDS CDE format - the
American Spinal Injury Association (ASIA) and International Spinal Cord Society
(ISCOS) standards and data sets for spinal cord injury have been successfully incorporated
into new NINDS CDEs.
- Reviewing and incorporating standards into existing CDEs - the
American Heart Association’s / American Stroke Association’s “Get With The Guidelines”
data elements have been incorporated into the Stroke CDEs; the NIH PhenX Toolkit
elements have been applied to epidemiological recommendations.
- Improving efficiency within agencies and avoiding duplicate efforts
- collaboration between the Department of Defense (DOD), Department of Veteran’s
Affairs (VA), and the National Center for Research Resources (NCRR) has yielded
more comprehensive and cost-effective CDE standards for traumatic brain injury (TBI).
- Synchronization with other standardization projects - there is
currently an effort to add the NINDS CDEs to existing data standard libraries including
the Clinical Data Interchange Standards Consortium (CDISC) and the National Cancer
Institute’s cancer Biomedical Informatics Grid (caBIG).
These collaborative efforts continue at least through the release of Version 1.0
of the various disease-specific CDEs. The NINDS CDE Web site will be updated to
report on the progress of these efforts.
Related Projects and Links
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