Refractory Epilepsy
Advanced data collection for treatment-resistant epilepsy — tracking complex medication regimens, seizure burden, and quality-of-life in patients who haven't responded to standard therapies.
Study Overview
About this study
Refractory (treatment-resistant) epilepsy affects roughly one-third of epilepsy patients and demands granular, continuous data to evaluate novel therapies. These patients often take multiple anti-seizure medications, experience frequent breakthrough seizures, and face significant quality-of-life impacts. Forma Health captures the full complexity of refractory epilepsy — multi-drug adherence, seizure clusters, rescue medication use, and functional status — giving researchers the resolution needed to detect meaningful changes in this difficult-to-treat population.
What's included
Key features
- Multi-medication regimen tracking with polypharmacy support
- Seizure cluster detection and breakthrough event logging
- Rescue medication usage and response tracking
- Comprehensive quality-of-life and functional status monitoring
- VNS/RNS device interaction logging for neuromodulation studies
Topic Configuration
Configured topics
Each study includes pre-configured topics that patients interact with daily. Here are examples of how we've set up data collection for this study.
Seizures
High-resolution seizure capture for patients with frequent, complex seizure types — including cluster events and status epilepticus.
Sample questions
- How many seizures did you experience today?
- Did you experience a cluster of seizures (multiple seizures within a short period)?
- Did you need to use rescue medication (e.g., diazepam, midazolam)?
- How long did it take to fully recover after the last seizure?
Mood
Monitor the psychological burden of treatment-resistant epilepsy, including depression and anxiety that are highly prevalent in this population.
Sample questions
- How would you rate your mood today on a scale of 1 to 10?
- Have you felt hopeless or discouraged about your seizure control?
- Did anxiety about having a seizure affect your activities today?
- Have you noticed any mood changes since your last medication adjustment?
Pain
Track pain associated with frequent seizures, post-ictal states, injuries from seizure events, and medication side effects.
Sample questions
- Are you experiencing any pain right now?
- Did you sustain any injuries during a seizure today?
- Do you have a headache following your most recent seizure?
- Has chronic pain affected your ability to function today?
Bowel Movements
Monitor GI function, which is frequently affected by multiple anti-seizure medications and important for medication tolerability assessments.
Sample questions
- How many bowel movements did you have today?
- Have you experienced nausea or vomiting today?
- Has your appetite been affected by your medications?
- Have you noticed any GI side effects from your current drug regimen?
Ready to see Refractory Epilepsy in action?
Book a demo and we'll walk you through this study configuration live.