Data Management and Sharing


There is an acute need to develop standards for identifying data and metadata both physiological and phenotypic.  The same holds with methods and techniques for collecting, annotating, and archiving data. Multi-center trials generally spend an inordinate amount of time and money trying to accomplish this…many of them re-inventing the wheel. Solving this problem will provide a cost benefit to funding agencies and will accelerate advances in the quality of care due to the information that can be mined from a unified database.

In this topic we will work with data repositories as well as helping to expand the NINDS Common Data Elements.  We will review and work with various standards and data organizations to provide recommendations.


Comments on this focus area are in the Forum Data Management and Sharing.

Resources and Supporting Literature