Charcot-Marie-Tooth disease with ptosis and parkinsonism
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ORDR Co-Sponsored Conferences
Third NIH Workshop on Gaucher Disease and Parkinsonism, Thursday, April 08, 2010 - Friday, April 09, 2010
Location: NIH- the Cloister, Bethesda, Maryland
Description: Workshop goals were to (1) determine the appropriate human, animal, or cell-based models to better understand this correlation; (2) explore the mechanisms and/or pathways involved; and (3) establish international collaborations to enhance progress in the field and to make recommendations for future study.
FTD Workshop to Develop CDEs and Pathology Data Elements for Future Clinical Studies, Tuesday, February 02, 2010 - Wednesday, February 03, 2010
Location: Miami, Florida
Description: 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.