CDE PROJECT UPDATES

Think Tank 2016

GRAND HYATT CHICAGO - CHICAGO, ILLINOIS - April 30, 2016

Dr. Mark Luciano discusses the progress on the ongoing Common Data Element (CDE) project to benefit Chiari, syringomyelia and related disorder patients. The Chiari I malformation CDE project took over 2 years to complete and brought together thought leaders and patient advocates to write the data dictionary to be used for all Chiari malformation research. This project was completed and published in January 2019 with the support of the National Institute of Neurological Disorders & Stroke (NINDS) at the National Institutes of Health. Dr. Luciano's presentation was given at the 2016 CSF Think Tank meeting in Chicago, IL. (2016)

Revised: 03/2020