Standardization Tools for SUDEP Research: Common Data Elements

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, with the aim of improving translation of animal models to the clinical setting. As a result, SUDEP common data elements (CDEs) and case report forms were developed to standardize data collection and reporting language for preclinical SUDEP research.

Speakers:

• Laura Lubbers, PhD, Chief Scientific Officer, CURE Epilepsy - Introduction & Background on SUDEP CDE development
• Aristea Galanopoulou, MD, PhD, Professor, Neurology, Albert Einstein College of Medicine - History of the development and use of CDEs in epilepsy research
• Christos Lisgaras, PhD, Research Scientist, The Nathan Kline Institute for Psychiatric Research - Practical use of SUDEP CDEs in research
• Vicky Whittemore, PhD, Program Director, Division of Neuroscience, NINDS - Considerations for the use of CDEs by research funding agencies

Learning Objectives:

After this webinar, 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 (YES), 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.

Registration deadline: 27 April 2024 at 17:00 CET