Authors :
Brittany Gazdag, BA – Praxis Precision Medicines
Karl Hansen, PhD – Praxis Precision Medicines
Silvana Frizzo, MD – Praxis Precision Medicines
Presenting Author: Michael Steidle, PharmD, MBA – Praxis Precision Medicines
Steven Petrou, PhD – Praxis Precision Medicines
Marcio Souza, PharmD, MBA – Praxis Precision Medicines
Rationale:
In the US, ~3.5 million people have epilepsy, almost a third of whom live with uncontrolled seizures. Associated with this is decreased quality-of-life and increased mortality risk from SUDEP and seizure-related accidents. EMPOWER is an ongoing research project in partnership with the Epilepsy Study Consortium, aiming to characterize longitudinal seizure burden and antiseizure medication (ASM) use patterns in patients with a confirmed epilepsy diagnosis.
Methods:
Participants aged ≥18 years who elect to enroll are followed for a prospective observational period of up to 24 months. 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. 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. Data are presented from the first 500 respondents.
Results:
Despite available treatments, two-thirds of respondents self-reported a seizure in the last month and 75% are on ≥1 ASM. Nearly half are unaware of, or do not know, their seizure type even when managed by a neurologist. 75% described their seizures as moderate-to-severe, with nearly half believing they are uncontrolled. 40% needed ≥2 ASMs, with higher usage among those seeing specialists or reporting recent seizures. Many patients with active seizures are not tracking their seizures, with both seizures and treatment side effects associated with significant quality of life impacts. Furthermore, 90% reported being fearful of another seizure.
Conclusions:
EMPOWER continues to generate standardized, longitudinal data to support planned interventional trials and deepen understanding of patient experiences of epilepsy. Findings from the first 500 patients reveals a significant disease burden compounded by persistent, uncontrolled, often untracked seizures alongside profound psychosocial impact.
Funding:
Praxis Precision Medicines.