OBJECTIVES: Electronic seizure diaries (eDiaries) in clinical studies provide insight into the lived experiences of participants with epilepsy. eDiaries are a relevant tool for providing real-time information, improving participant compliance by allowing programming of reminders and notifications, reducing participant burden, standardising approach to seizure data collection, and ensuring data accuracy. We explored electronic seizure diaries to describe eDiary design, content of eDiaries, and participant compliance.

METHODS: Five studies across different phases and various indications, such as epilepsy and genetic disorders, were analysed for content and participant compliance with seizure eDiaries using Clario’s application.

RESULTS: All eDiaries were programmed as daily and episodic (available all day to report a seizure), and collected seizure type, date, and timing of occurrence of the seizures (n=5 studies). One diary asked if the occurred seizure was single seizure or cluster seizure. Where the age range of the study population included paediatric population, diaries included caregiver reporting options (n=4 studies). All the studies utilised Clario’s seizure module, where the seizure type was displayed in participants’ own words in the eDiary. Compliance for diaries was high, with an average of 86% completion rate (range 82% – 90%). All five studies had reminder and email notifications programmed for missed diaries and included a participant compliance report.

CONCLUSIONS: This exploratory analysis suggests that eDiaries for recording seizures are useful and feasible for participants to provide information about their seizures in clinical trials. Seizure eDiaries are a relevant tool for timely reporting of seizures for participants and caregivers, as demonstrated by high compliance. Allowing participants to report seizures in their own words may provide easier and more accurate reporting.