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.
*Preclinical SUDEP CDEs are currently being created in an effort led by CURE Epilepsy in collaboration with an expert group of preclinical and clinical SUDEP researchers. This effort is generously supported by the BAND Foundation.