Characterizing seizure burden and antiseizure medication (ASM) use patterns over time in epilepsy patients; empowering them to actively participate in their epilepsy journey.
An estimated 3.5 million people in the US have epilepsy, with nearly one third experiencing uncontrolled seizures. This is associated with decreased quality-of-life and increased mortality risk from SUDEP and seizure-related accidents.
EMPOWER is an ongoing study where participants with epilepsy elect to enroll and are followed for a prospective observational period of up to 24 months. EMPOWER aims to recruit ~3,000 US participants aged 18 years or older with a confirmed epilepsy diagnosis.
Eligible participants will access an electronic seizure diary to record seizures and ASM use. Participants opting to share medical records will have linked records capturing seizure-related disease course, and prospectively tracking intercurrent events (e.g. hospitalizations, infections). Study surveys will collect information including demographics, seizure types/counts and seizure tracking behavior. Periodically, summarized deidentified reports will be shared with participants to facilitate learning from others’ experiences. Preliminary data are presented for 81 participants (10/2024).
Most participants were diagnosed with epilepsy by a neurologist over 2 years after their first seizure, with nearly half unaware of their epilepsy type. 62% reported having at least 1 seizure in the past month, and nearly 75% described their seizures as moderate-to-severe. Over half believe their seizures are uncontrolled, despite 40% currently using 2 or more ASMs and over 50% having previously tried 3 or more. Over half of participants reported marked adverse impact on quality-of-life, irrespective of their seizure burden. More than half considered participating in an epilepsy clinical trial in the past year.
EMPOWER will generate standardized, longitudinal data to support planned interventional trials and deepen understanding of patient experiences of epilepsy. Preliminary findings reveal a significant disease burden compounded by persistent, uncontrolled seizures and profound psychosocial impact.