The below resources are available on this page for the research community:
We are sharing our policies and procedures so they can be a resource for the ever-growing and evolving research community. We encourage you to utilize these resources and adapt them as needed for your individual organization or project.
In the below section, you will find links to available CURE Epilepsy-created or –sponsored common data elements (CDEs) for use in data collection and reporting. CDEs are variables that have been deemed essential to collect for studies of a particular type; utilizing CDEs can help increase rigor, transparency, standardization and ability to aggregate data from research studies.
Preclinical Epilepsy CDEs
*Created by the International League Against Epilepsy/American Epilepsy Society Joint Translational Task Force, sponsored in part by CURE Epilepsy
Traumatic Brain Injury (TBI)/Post-Traumatic Epilepsy (PTE) CDEs
*Electronic CRFs were created as part of CURE Epilepsy’s PTE Initiative and contain CDEs sourced primarily from the NINDS CDE and Federal Interagency TBI Research (FITBIR) Informatics System databases.
*Note that you will need a REDCAP account to be able to access these CRFs. Accounts are often available through individual institutions/universities. For more information, visit the REDCAP website.
Sudden Unexpected Death in Epilepsy (SUDEP) CDEs
*During the 2020 SUDEP Coalition Summit, which brought together key stakeholders to provide a roadmap for action towards the ultimate goal of ending SUDEP, the need for tools and methods to better characterize and understand the clinical relevance of SUDEP animal models was identified. In 2022, the SUDEP Data Standardization Project was initiated to fill this need, providing a 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.
This effort is generously supported by the BAND Foundation.
Thank you to our SUDEP Standardization Tools Project Working Group Members.
The below forms are available for public review. Please click here to access the review survey. Click on the links below to download the forms for review. If you experience an issue accessing the forms or the survey, please contact Mary Holmay at Mary.Holmay@cureepilepsy.org