The research question
How complete and useful are patient or caregiver event diaries in a defined epilepsy cohort?
Proposed design
Event diary with scheduled seizure-free-day confirmation, periodic burden assessments and optional clinical validation.
Illustrative design: 8- to 12-week diary; setup and recruitment are scoped separately.
Data to collect
- Reported event timing and characteristics
- Seizure-free days and reporting gaps
- Reported medication use and missed doses
- Sleep, fatigue and activity restrictions
Planned outputs
- Event-reporting and completion patterns
- Treatment-burden summaries
- Agreement with verified events where available
What we confirm with you
We agree the population, sample size, country, collection tools, analysis plan and budget. Collection starts after the required consent, ethics or other permissions and a signed scope are in place.
- Agree event definitions and caregiver-report permissions
- Set clinical oversight and escalation arrangements
- Separate reported events from EEG-confirmed seizures
Clinical records, laboratory results, photographs and device integrations are included only when access, collection quality and permitted use have been verified. Self-reported findings are identified as such.
Research context
These published sources explain the research need or method. They are not RIDLY customers, endorsements or purchase commitments.
- App-based seizure reporting validation study
An epilepsy-monitoring-unit study compared diary reports with clinical observations and found patient-dependent reporting performance.
Related dataset profiles
For an existing-data inquiry, start with a coverage review.