UCB, a global biopharmaceutical company, announced it will present 26 abstracts from its epilepsy portfolio at the International Epilepsy Congress (IEC) in Lisbon, Portugal, from August 30 to September 3, 2025. The data will focus on developmental and epileptic encephalopathies (DEEs), including Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS), as well as prolonged seizures and seizure emergencies.
"At UCB, we are committed to driving improvements in all aspects of care for people living with epilepsies and severe epileptic conditions," said Dimitrios Bourikas, global epilepsy medical head of DEE and Epilepsy at UCB. "The breadth of data we are presenting at the International Epilepsy Congress reflects our dedication to advancing innovative solutions that address real-world patient needs."
Fenfluramine Long-Term Safety and Efficacy
A combined open-label extension (OLE) study enrolled 412 patients with DS or LGS who had participated in three previous fenfluramine studies. The research reported no new or unexpected safety signals and demonstrated long-term sustained benefit for patients receiving the treatment.
Diagnostic Challenges in Adult DEE Care
Research examining barriers and benefits of identifying patients with DEE in adult care settings revealed significant diagnostic gaps. While diagnosis of developmental and epileptic encephalopathies in children has become routine, substantial challenges remain for adults. A qualitative study based on interviews with caregivers and healthcare professionals in the UK, Germany, France, and Spain found that a confirmed diagnosis fosters holistic care, which may improve quality of life, enhance communication, and reduce risk of hospitalization for patients.
Impact of Unpredictable Seizures on Caregivers
An internet-based anonymous 63-question survey distributed to caregivers of patients with DEEs by multiple DEE-specific patient groups provided insights into the burden of care. Nearly half of caregivers reported that high rates of disruptive seizures and behavior led to temporary loss in abilities, previously associated with reduced quality of life.
Prolonged Seizures Research Findings
UCB's research portfolio includes multiple studies characterizing prolonged seizures and their impact on patients and caregivers. Research characterizing patient and caregiver experiences of prolonged seizures describes unmet needs and the significant short-term and long-term negative impact on quality of life.
Real-world data from Adelphi's Prolonged Seizure Disease Specific Programme characterizes the definition, prevalence, and patient population of prolonged seizures. The findings indicate that people living with epilepsy experiencing prolonged seizures encounter significant seizure worry due to their condition. Additionally, these seizures regularly progress to status epilepticus and/or seizure clusters, leading to emergency care and hospital admissions, despite best practice care.
A post hoc analysis of video-EEG recordings from 725 patients explored seizure duration and time-point cutoffs for statistically defining possible and probable prolonged seizures by seizure type. The analysis supports the 2-minute cutoff for tonic-clonic seizures (focal/generalized onset) and suggests a 1 to 3 minutes cutoff for other seizures, confirming that most seizures are abnormally prolonged at 2 minutes or less.
Care Pathway Optimization
A qualitative study aimed at understanding the end-to-end care process for acute seizure emergencies found that a stronger focus on outpatient guidelines could empower patients and caregivers to manage prolonged seizures in the outpatient setting, potentially avoiding unnecessary seizure escalation, injury, hospitalization, and death. Additionally, a global analysis assessed the availability and reimbursement coverage of seizure acute medications for use in the outpatient setting.
Lennox-Gastaut Syndrome Diagnostic Support
Diagnosing Lennox-Gastaut syndrome (LGS) presents challenges due to the heterogeneity of its clinical presentation and symptom evolution over time. A group of ten epilepsy experts from seven countries convened to develop a simple-to-use checklist for non-specialists to support LGS diagnosis, using the International League Against Epilepsy criteria as a framework.
UCB-Sponsored Symposium
UCB will host a symposium titled "Time matters in developmental and epileptic encephalopathies" on Monday, September 1st, from 13:55 to 15:05. The session aims to enhance knowledge and awareness of the broader impact of DEEs in adulthood beyond seizure control, focusing on improving diagnosis, understanding treatment journeys, and addressing barriers to care to drive better individual outcomes.
UCB, based in Brussels, Belgium, is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or central nervous system. With approximately 9,000 people in approximately 40 countries, the company generated revenue of €5.3 billion in 2023.
