Sudden unexpected death in epilepsy (SUDEP) remains a devastating, poorly understood complication of epilepsy, and progress has been hampered by nonstandard data capture across preclinical studies. Following the 2020 SUDEP Coalition Summit recommendation, CURE Epilepsy convened a steering committee and expert working groups to create preclinical common data elements (CDEs) and case report forms (CRFs). They adapted established methods used for other epilepsy CDEs to improve rigor, repeatability, and cross-study comparability.
The priority deliverable is the core and death-related information CRF, which standardizes documentation of animal models and experimental conditions. It also captures details of triggered and spontaneous seizures, plus seizure-related death data—including observations at death, characteristics of the fatal event, posture, diet, medications, and comorbid health issues. Consistent use of these core CDEs, together with supplemental elements described in the companion paper, should enable harmonized reporting, facilitate data sharing and meta-analyses, and support multicenter studies. In turn, this shared infrastructure is intended to accelerate mechanistic insights and the evaluation of preventive strategies aimed at reducing SUDEP.
Reference: Iyengar SS, O’Loughlin EK, Harte-Hargrove L, et al. Enhancing sudden unexpected death in epilepsy (SUDEP) research through development of common data elements. Epilepsia Open. 2025. doi: 10.1002/epi4.70105. Epub ahead of print.
Link: https://onlinelibrary.wiley.com/doi/full/10.1002/epi4.70105
