Abstracts

Rationale: To assist investigators conducting studies and increase data sharing among researchers, the NINDS convened a Working Group of experts to develop CDEs with accompanying documentation specific to adult and pediatric epilepsy clinical research. The Epilepsy CDE Working Group finished their development work in September 2010 and Version 1.0 of the Epilepsy CDEs was published on the NINDS CDE Website (http://www.commondataelements.ninds.nih.gov/) for public use in October 2010.Methods: The NINDS has undertaken various activities to encourage researchers to use the Epilepsy CDEs and to ensure they remain a current and useful resource for clinical research. These activities include 1)Convening an Epilepsy CDE Oversight Committee (OC) to help maintain and improve the Epilepsy CDEs; 2) Publicizing the existence of the Epilepsy CDEs in NINDS program announcements, at conferences and meetings, and in journals and other wide-reaching publications; 3) Offering CDE Web site training via Webinars, training sessions at meetings, and tutorials on the Web site, that shows how to select Epilepsy CDEs for use; 4) Connecting newly funded investigators with the NINDS CDE Team to offer training and advice on how to incorporate the Epilepsy CDEs into their studies; 5) Proactively collecting feedback from researchers who NINDS is aware are using the Epilepsy CDEs Results: The poster presentation will convey the latest and most pertinent information about the Epilepsy CDEs, including 1)Show examples of how the Epilepsy CDEs may be used by a clinical study; 2)Demonstrate how to navigate the Web site and select Epilepsy CDEs from it; 3) Explain how to submit feedback about the Epilepsy CDEs; 4) Describe training available to research team members interested in using the Epilepsy CDEs; 5) Provide updates on the Epilepsy CDE OC, including preparations for their first meeting, which will take place during the 2011 American Epilepsy Society Annual Meeting. Conclusions: The NINDS strongly encourages investigators conducting epilepsy clinical studies to use the Epilepsy CDEs and to submit their comments about them. The best way to ensure the Epilepsy CDEs are useful tools and the CDE Project accomplishes its goals is to continuously revise and add to the CDEs based upon the feedback of researchers. This feedback will also be crucial to enabling the Epilepsy CDE OC to maintain and improve the Epilepsy CDEs over time.