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Abstract Details

National Institute of Neurological Disorders and Stroke Epilepsy Common Data Element Updates: Seizure Severity Instruments, Diagnostic Tools, and MRI Recommendations
Epilepsy/Clinical Neurophysiology (EEG)
P15 - Poster Session 15 (12:00 PM-1:00 PM)
12-004
The National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element (CDE) project provides standardized data collection tools with consistent definitions for clinical neuroscience research. The goals of this project are to improve data collection and quality, thereby increasing efficiency with reduced study start-up time/cost and facilitating data sharing/meta-analyses.
Epilepsy-specific CDEs, developed in 2010, have undergone annual review and periodic updates by the Epilepsy CDE Oversight Committee (OC) to ensure they remain a current and useful resource for investigators. Feedback received during the public review of recent Epilepsy CDE updates suggested the addition of a seizure severity scale. The OC proposed adding diagnostic tools to the CDEs and revisions to the Magnetic Resonance Imaging (MRI) case report form (CRF).
A quality of life (QoL) subcommittee was tasked with developing CDE recommendations for instruments measuring perception of seizure severity. A literature review was conducted. Availability in English, clinical relevance, psychometric properties, respondent burden, and cost were considered in determining which instruments to recommend. The OC approved the recommendations and an additional OC subcommittee is reviewing potential epilepsy diagnostic tools to add to the CDEs. The Imaging WG will review updates to the MRI CRF.
The Liverpool Seizure Severity Scale 2.0 and the Seizure Severity Questionnaire V2.2 (Baseline and Follow-Up Versions) are recommended as seizure severity perception measurements in adults with epilepsy. Instrument summary documents and a summary report will be posted on the NINDS CDE website. Epilepsy diagnostic tool recommendations and updates to the MRI CRF may also be added to the Epilepsy CDEs, pending OC review.
The Epilepsy CDEs are updated based on scientific advancements and user feedback. NINDS encourages use of the CDEs by the clinical research community to standardize data collection across studies, enabling data sharing and meta-analyses.
Authors/Disclosures
Katelyn E. Gay (The Emmes Company, LLC)
PRESENTER 		Ms. Gay has received personal compensation for serving as an employee of The Emmes Company, LLC.
No disclosure on file
Jacqueline French, MD, FÂ鶹´«Ã½Ó³»­ (NYU Comprehensive Epilepsy Ctr) Dr. French has received personal compensation in the range of $50,000-$99,999 for serving as an officer or member of the Board of Directors for Epilepsy Foundation. The institution of Dr. French has received research support from Epilepsy Study Consortium/ Epilepsy Foundation (Funded by UCB). The institution of Dr. French has received research support from GW/One8 Foundation/FACES. The institution of Dr. French has received research support from NINDS. The institution of Dr. French has received research support from Xenon. The institution of Dr. French has received research support from Cerevel. The institution of Dr. French has received research support from FACES. The institution of Dr. French has received research support from UCB. The institution of Dr. French has received research support from Epilepsy Study Consortium. The institution of Dr. French has received research support from UCB. The institution of Dr. French has received research support from Praxis. Dr. French has received personal compensation in the range of $50,000-$99,999 for serving as a Chief Medical/Innovation Officer with Epilepsy Foundation. Dr. French has a non-compensated relationship as a Consultant with Acadia Pharmaceuticals Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Access Industries that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Acuta Capital Partners LLC that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with AFASCI Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Agrithera, Inc. that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Alkermes that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Alterity Therapeutics Limited that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Angelini Pharma S.p.A. that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Autifony Therapeutics Limited that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Axonis Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Bain Capital that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Beacon Biosciences that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Biogen that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Biohaven Pharma that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Bloom Science, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Bright Minds Biosciences, Inc. that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Capsidia Biotherapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Cerebral Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Cerecin, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, SAB with Cerevel that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting, SAB with Cognizance Biomarkers that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting with Ceribell that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Cowen that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Crossject that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Advisory Board with EcoR1 Capital that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with EG 427 that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant, Advisory Board with Eisai that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Encoded Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant/Advisory Board with Engrail that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Epitel, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with EpiMinder that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Grin Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Harmony that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Advisory Board with Ionis Pharmaceutical that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with iQure Pharma, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with IQVIA that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Janssen Pharma that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Jazz Pharmaceutical that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Leal Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, with Livanova that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, SAB with London Research & Pharmaceuticals that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Longboard Pharmaceutical that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Maplight Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Marinus that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Medscape/Web MD that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Modulight Bio that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Montara Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Mosaica Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Neumarker that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Neumirna Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Neurelis that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consulting, Advisory Board with Neurocrine that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consultant with Neuropace that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with NeuroPro Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting with Neuroventis that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting with Neurona Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting, Advisory Board with Neuvarti that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Noema that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting with Ono Pharmaceutical that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting, Advisory Board with Otsuka that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a consulting, Advisory Board with Ovid Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consulting with Praxis that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with PureTech LYT Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with QurAlis Corp that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Rapport Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Receptor Holdings, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Rivervest Venture Partners that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Sage Therapeutics, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with SK Life Science that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Stoke that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Stream Neuroscience that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Supernus that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Takeda that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Taysha Gene Therapies that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with UCB, Inc that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with uniQure that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Ventus Therapeutics that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant with Vida Ventures Management that is relevant to Â鶹´«Ã½Ó³»­ interests or activities. Dr. French has a non-compensated relationship as a Consultant, Advisory Board with Xenon Pharmaceuticals that is relevant to Â鶹´«Ã½Ó³»­ interests or activities.
William D. Gaillard, MD (Children'S National Hospital) The institution of Dr. Gaillard has received research support from all federal or foundation grants, NINDS, NIDCD, NICHD, NSF ,PERF.
No disclosure on file
No disclosure on file
Daniel H. Lowenstein, MD (UCSF) Dr. Lowenstein has received research support from NIH.
Muniza Sheikh (The Emmes Company, LLC) Ms. Sheikh has received personal compensation for serving as an employee of The Emmes Company.
No disclosure on file
Joy R. Esterlitz (The Emmes Corp) No disclosure on file
No disclosure on file
No disclosure on file