SUDEP - Data tools for research - YES & CURE Epilepsy foundation

In 2022, CURE Epilepsy initiated the SUDEP Data Standardization Project to create standardized data collection and reporting language to help preclinical researchers characterize and understand SUDEP animal models and improve their translation to the clinical setting. As a result, SUDEP common data elements (CDEs) and case report forms were developed to standardise data collection and reporting language for preclinical SUDEP research. This video will help viewers understand the history and development of epilepsy CDEs with a special focus on preclinical Sudden Unexpected Death in Epilepsy (SUDEP) CDEs that have been developed in collaboration with CURE Epilepsy and the SUDEP research community. Speakers will discuss the impact CDEs can have on the translational relevance of preclinical investigations, and how the CDEs can be used in the context of daily preclinical research. There will also be a live feedback session with the speakers following the webinar. To learn more about the SUDEP CDEs and case report forms, you can preview them here. This webinar is hosted by the ILAE Young Epilepsy Section and moderated by Dr. Cecilie Nome. Speakers: Laura Lubbers, PhD, Chief Scientific Officer, CURE Epilepsy Aristea Galanopoulou, MD, PhD, Professor, Neurology, Albert Einstein College of Medicine Christos Lisgaras, PhD, Research Scientist, The Nathan Kline Institute for Psychiatric Research Vicky Whittemore, PhD, Program Director, Division of Neuroscience, NINDS Learning Objectives: After this video, the participant will: Understand the history and development of common data elements (CDEs) and use in epilepsy research. Be able to apply practical use of SUDEP CDEs in their preclinical research, including for data collection and data analysis. Appreciate the importance of the use of SUDEP CDEs when applying to funding agencies. This webinar, hosted by the ILAE Young Epilepsy Section, will help viewers understand what SUDEP CDEs are, what impact they could potentially have on the translational relevance of their preclinical investigations, and how the CDEs can be used in the context of daily preclinical research.