Key Takeaways

• 95% survey completion and 70% EMR-share rates in the registry

• Retrospective & prospective seizure data without vendor “data stitching”

• Actionable evidence to shorten protocol design by an average 6-12 months

Why Real-World Data Still Falls Short in Epilepsy

Epilepsy affects millions of people worldwide, yet despite advances in treatment, over 30% of patients still experience uncontrolled seizures. Managing the condition is a lifelong challenge, requiring continuous monitoring and personalized insights to understand triggers and improve outcomes. At the same time, researchers need real-world data to develop more effective therapies.

Embleema’s platform provides the unique ability of allowing our community to better manage their condition in a user-friendly manner, while at the same time, providing researchers with valuable, interpretable real-world data.

- Jacqueline French, MD, Founder/Director of the Epilepsy Study Consortium, and Chief Medical/Innovation Officer/Research Editor of Epilepsy Foundation

Recognizing these needs, Embleema partnered with the Epilepsy Foundation and Jacqueline French, MD to launch an innovative research initiative: Battling Epilepsy Together, also known as the Epilepsy Digital Experience Navigator (EDEN). This initiative leverages the Embleema app to empower patients in managing their condition while also generating valuable real-world data to advance precision medicine in epilepsy care.

Our Patient-First Registry Approach

Battling Epilepsy Together (BET) reimagines a registry as both a self-management app and a research engine.

• Log seizures in seconds. Single-tap entries sync across web, iOS, and Android.

• Integrate EMRs & wearables. Pull clinical notes, EEGs, and device signals into one timeline.

• Deliver instant insights. Personalized charts reveal medication adherence vs. seizure frequency, and keep engagement high.

• Multilingual, mobile-first. Ensures accessibility from a diverse community.

• Recruit pre-qualified participants. Sponsors can screen opt-in profiles without cold outreach.

By fostering a highly engaged and pre-qualified patient community, BET enables faster, more effective recruitment for research studies. This dual purpose—patient empowerment and clinical trial support—makes BET an essential tool for advancing precision medicine.

Dashboard view from the BET participant app, available on iOS, Android, and web.

Demonstrated Registry Impact to Date

BET is demonstrating that patient-centric design accelerates both engagement and evidence generation:

• Accelerated Enrollment: BET achieved a 15% patient match rate within the first 30 days. This rapid onboarding is crucial for keeping studies on schedule and reducing overall trial costs.

• Data Quality and Richness: The initiative collects linked real-world data, including seizure logs, EHRs, device signals, and patient-reported outcomes (PROs). This consolidated data streamlines research and enhances the quality of insights.

• Patient-Centric Approach: Designed with inclusivity in mind, BET’s multilingual, mobile-first approach ensures accessibility across diverse populations, including those typically underrepresented in research.

• Community Engagement: By partnering with trusted patient organizations, BET remains involved in contributing to the epilepsy community.

Lessons Sponsors Can Apply Today

• Design for the long haul. Build registries that serve patients every day, not just when a study is open.

• Prioritize consent flexibility. Let participants choose which data sources to share—opt-in rates climb.

• Leverage advocacy networks. Trusted organizations amplify recruitment faster than paid ads.

• Merge retrospective + prospective data. Start with historical EMR export, then stream new seizure events to tighten study windows.

What’s Next? Choose Your Path

Still evaluating?

Explore our Lupus Registry case study to see how Embleema scales across therapeutic areas, or schedule an introductory call.