| Title: |
A companion to the development of common data elements for Sudden Unexpected Death in Epilepsy (SUDEP) |
| Authors: |
Sloka S. Iyengar; Elaine K. O'Loughlin; Lauren Harte‐Hargrove; Mary Holmay; Laura S. Lubbers; Working Group Members |
| Source: |
Epilepsia Open, Vol 10, Iss 5, Pp 1439-1449 (2025) |
| Publisher Information: |
Wiley |
| Publication Year: |
2025 |
| Collection: |
Directory of Open Access Journals: DOAJ Articles |
| Subject Terms: |
additional phenotypes; case report form; common data element; electrophysiology; neuroimaging; neurological; Neurology. Diseases of the nervous system; RC346-429 |
| Description: |
Objective Sudden unexpected death in epilepsy (SUDEP) is a rare but devastating consequence of epilepsy and is the leading cause of death in people with epilepsy. SUDEP is associated with certain characteristics such as the presence of generalized tonic–clonic seizures, duration of epilepsy, and refractoriness to anti‐seizure medications. Despite insights from in vivo models, gaps persist in understanding the biological causes of SUDEP, leading to a lack of preventative tools. Current SUDEP preclinical models and data collection and reporting can vary widely across laboratories, hindering the direct translation of findings to humans. Methods The 2020 SUDEP Coalition Summit brought together a team of experts to chart areas of growth and tactics to address these areas. A critical research priority revealed during the summit was the development of data standardization tools to unify SUDEP research efforts. In response, CURE Epilepsy established a Steering Committee to oversee an effort to develop data standardization tools and worked with community members composed of experts in specific domains of SUDEP research to define these tools. Results Experts developed common data elements (CDEs) and case report forms (CRFs) to systematize preclinical SUDEP research. An accompanying publication describes the priority core and death‐related information CRF, while the current work describes supplemental CRFs that SUDEP researchers can use. Specifically, CDEs related to neurological variables, physiologic measures, therapeutics and pharmacology, neuroimaging, ex vivo electrophysiology, and additional phenotypes related to epilepsy are described. Significance Along with the core and death‐related CRF, supplemental CRFs can help the unification of SUDEP research by systematizing various endpoints. Adoption of these data standardization tools can also enhance collaboration between teams, hasten the translatability of SUDEP research to the human condition, and ultimately help prevent SUDEP. Plain Language Summary ... |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| Relation: |
https://doi.org/10.1002/epi4.70103; https://doaj.org/toc/2470-9239; https://doaj.org/article/176319e689a74c1c8bff576043ad5a7c |
| DOI: |
10.1002/epi4.70103 |
| Availability: |
https://doi.org/10.1002/epi4.70103; https://doaj.org/article/176319e689a74c1c8bff576043ad5a7c |
| Accession Number: |
edsbas.60A4DD0C |
| Database: |
BASE |