At-Home EEG Data Collection in Rare Pediatric Epilepsy

Context‍

Natural History Studies (NHS) aim to enhance our understanding of specific Developmental and Epileptic Encephalopathies (DEEs). As part of an observational study, objectively phenotyping the EEG signatures of such patients can help determine disease-specific surrogate markers for disease progression and aid in developing more targeted and effective treatments.‍

Challenge

The primary challenge is the need for continuous and comprehensive EEG data collection in a real-world setting. Traditional in-clinic EEG monitoring poses several limitations, including patient inconvenience, high costs, and the inability to capture long-term data reflective of the patient's natural environment. These limitations hinder the ability to gather accurate and representative EEG data necessary for phenotyping the condition. In addition, enrollment will need to be organized in multiple countries to reach an adequate number of patients and obtain meaningful insights.‍

Solution‍

To address these challenges, Clouds of Care brings forward an innovative at-home data acquisition strategy involving overnight video EEG monitoring combined with a multi-day wearable EEG acquisition. The full-montage overnight video EEG will provide detailed insights into the patients' nocturnal brain activity, while the wearable device will allow for continuous monitoring over multiple days in the patients' natural environment.

To accomplish this, Clouds of Care brings together EU and US-based service providers to ensure accurate and reliable data collection across multiple countries. Consolidated procedures ensure consistency and standardization through uniform training of EEG technicians and a smooth at-home experience for patients and their caregivers.‍

Impact

An at-home EEG monitoring strategy, combining multiple EEG acquisitions into a consolidated service, can yield significant results:

• The continuous data collection over an extended period provides a rich dataset that is more representative of the patient’s typical EEG patterns. This leads to a more accurate phenotyping of the EEG signature associated with the rare epilepsy.
• The at-home monitoring setup provides greater comfort and convenience to patients and caregivers and can improve enrollment and compliance, in addition to capturing more reliable data.
• Integrating various Digital Health Technology providers into a single customized solution can lead to considerable enhancements in operational efficiency and the elimination of costly redundancies.

The innovativeuse of at-home EEG monitoring sets a new standard for data collection in the study of rare neurological disorders, demonstrating the potential for more patient-centric and decentralized clinical trials.

Made possible by our curated DHT partners:‍

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