Abstracts

Rationale: Digital platforms are becoming very common in the Neurology space as a source of insights directly from the patient. These platforms aim to improve self-management while also providing an opportunity to combine aggregate data on large disease populations. This real-world data (RWD) approach can be used to inform research on drug development and other interventions. The Epilepsy Foundation is creating a novel data aggregation platform named EDEN (Epilepsy Digital Experience Navigator) to empower patients with insights derived from their personal data as well as provide the research community with RWD appropriate to their specific needs.

Methods: The Epilepsy Foundation is building a first-of-its-kind digital ecosystem using HIPAA-compliant blockchain technology from Embleema. The goal is to connect patients, caregivers, providers & researchers to advance care & research in epilepsy. Patients with epilepsy and/or their caregivers will be invited to join EDEN. They will be able to track seizures, adverse effects of medication, mood, and medications and upload their medical records. With their consent, deidentified information will be securely analyzed to investigate real-world outcomes to interventions. Users will have access to real-time personalized insights and benefit from digital services such as identifying clinical trials they are eligible for based on the information they provide.

Results: To date the following components are planned for EDEN’s launch: 1) Onboarding information that will assess demographics, seizure frequency, medications and perceived disability, 2) a “seizure classifier” that will help users confirm their specific seizure type and syndrome, 3) an adverse event tracker, 4) Fitbit integration to track sleep quality, activity levels and resting heart rate, 4) electronic seizure diary integration, 5) novel “S-Check” system (Fig. 1) that will track seizures via customized regular text inquiry, 6) weekly “5-question, fast quiz”, that will provide personalized insight on a topic based on user responses (eg sleep, SUDEP, medication adherence), 7) continuous integration with patient facing electronic medical records (Fig. 2) (including diagnosis codes, medication, procedures and lab results).

Conclusions: The EDEN platform is intended to empower people with epilepsy and their caregivers by encouraging them to donate their epilepsy journey. The intent is to improve the lives of people living with epilepsy in the short term through 1) return on insights based on their input, and 2) an opportunity to visualize their data and share it with their health provider. The long term benefits through analysis of the longitudinal data will provide an unprecedented insight into an individual’s epilepsy journey. As the platform matures, more capabilities will be added to improve data collection.

Funding: Please list any funding that was received in support of this abstract.: EDEN has received funding from Eisai Co, Ltd. and Otsuka Pharmaceutical Development & Commercialization.