New data presented at AAN 2026 highlights the link between disrupted sleep and temporary losses in daily function and communication for people with developmental and epileptic encephalopathies.
Key takeaways:
- Interim survey results from 489 caregivers detail how sleep disruptions affect activities of daily living and communication in patients with developmental and epileptic encephalopathies.
- Findings emphasize the need to address disease impacts beyond seizures alone and prioritize sleep as an endpoint in future epilepsy research.
- The patient-centric data was presented by UCB at AAN 2026.
Global biopharmaceutical company UCB presented new real-world data demonstrating the impacts of sleep disturbances on activities of daily living and communication for individuals with developmental and epileptic encephalopathies.
The interim survey results were shared at the American Academy of Neurology (AAN) 2026 Annual Meeting. To gather the data, caregivers of people living with developmental and epileptic encephalopathies (n=489)—which are characterized as rare, severe, and lifelong epileptic syndromes—completed an anonymous 63-question survey. The responses provided detailed information on sleep disruptions and their specific impact on patients’ activities of daily living and communication abilities.
“Many people living with developmental and epileptic encephalopathies…experience significant sleep problems and behavioral difficulties, which can have real and long-lasting impacts on quality of life,” says Andrea Wilkinson, UCB global head of patient engagement & advocacy, epilepsy & neuromuscular, and lead author of the study, in a release. “These results demonstrate the clear relationship between disrupted sleep and temporary losses in daily function and communications, underscoring the importance of addressing disease impacts beyond seizure alone and continuing to prioritize sleep as an endpoint in future research to improve outcomes.”
The sleep disruption data was part of a broader presentation by UCB at the AAN meeting, which included multiple abstracts assessing the quality-of-life impacts that severe neurological conditions and prolonged seizures have on patients and their caregivers.
