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FTD Workshop to Develop CDEs and Pathology Data Elements for Future Clinical Studies

Tuesday, February 02, 2010 - Wednesday, February 03, 2010
Miami, Florida

The goals of the workshop were to (1) establish a protocol for standardized collection of first and serial neurological and neuropsychological data on FTD patients within the interested ADCs; (2) establish FTD-specific pathology data elements and determine whether the ADC pathology protocol addresses these elements or modification is needed for a FTD-specific pathology module; (3) develop a plan to integrate FTD data into the NACC data structure and allow linkage to other ADCs; (4) develop a mechanism to roll out a new data plan within the ADC community; and (5) form a clinical task force for FTD to monitor collection of standardized data.

Contact: Dr. Margaret Sutherland, 301-496-5680

Co-funding Institute(s):
National Institute of Neurological Disorders and Stroke
Office of Rare Diseases Research