NINDS Public Crowdsourcing Community Ideas

Patients need biomarkers and/or technological devices to better predict and accurately detect seizure activity. Studies in animal models and in patients to search for predictive biomarkers of seizures and/or biomarkers that may predict risk of SUDEP are urgently needed. Devices that are more convenient and more accurate for patients of all ages to utilize for seizure detection and SUDEP prevention need to be developed... more »

As a community of 19 patient and professional groups across the epilepsy community, we applaud the work of the Benchmark Committee and NINDS for launching this open call for transformative priorities for "Curing the Epilepsies". Looking back over the 20 years invested in national conferences toward Curing the Epilepsies and 3 cycles of Benchmarks to set priorities, we are concerned that progress for persons living and... more »

AES believes this is high public health priority as it will save lives i.e., to identify patients at higher risk for SUDEP and thus particularly in need of pharmaco-treatments or preventative devices (AICD) or patient surveillance. It will, however, be a major challenge due to ascertainment and low (sporadic) sample size worldwide. A genetic approach to identify genes associated with SUDEP is laudable though it seems... more »