The Epidemiology of the Rare Epilepsies Using Electronic Health Records
The Rare-Epilepsy Network (REN.rti.org), funded by PCORI, was conceptualized and designed in 2014 by patient partners, researchers and clinicians with the objective of creating the largest registry of well-characterized individuals diagnosed with a rare epilepsy syndrome (e.g., West, Dravet, Lennox-Gastaut) or a syndrome/condition with a genetic basis that had epilepsy as a co-occurring condition in […]