UCB presents latest research and clinical advancement across leading epilepsy portfolio at International Epilepsy Congress

Brussels (ots/PRNewswire)

* 26 scientific abstracts, including two oral presentations, demonstrate UCBs ongoing commitment to advancing research for people living with epilepsies
* Data include an open-label extension study describing the long-term safety of FINTEPLA®▼ (fenfluramine)[1] and global functioning in children and adults with Dravet syndrome or Lennox-Gastaut syndrome[2]
* Data provide insights on developmental and epileptic encephalopathies (DEEs), including a qualitative study addressing diagnostic challenges and benefits in adult care settings, and a caregiver survey exploring the daily impacts of unpredictable seizures and disruptive behaviors[3],[4]
* Additional focus on defining prolonged seizures and their real-world impact on patients and caregivers[5],[6],[7]

UCB, a global biopharmaceutical company, today announced it will present 26 abstracts from its epilepsy portfolio at the International Epilepsy Congress (IEC) Congress, Lisbon, Portugal, August 30 – September 3, 2025. Data will focus on developmental and epileptic encephalopathies (DEEs), such as Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS), as well as prolonged seizures, seizure emergencies and early pipeline research.

Dimitrios Bourikas, Global Medical Head of DEE and Epilepsy, UCB, commented: „At UCB, we are committed to driving improvements in all aspects of care for people living with epilepsies and severe epileptic conditions. 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. By deepening insights into disease mechanisms, treatment outcomes, and the experiences of both patients and caregivers, we strive to shape a better future for those affected by epileptic conditions.“

HIGHLIGHTS OF DATA TO BE PRESENTED AT IEC:

FENFLURAMINE:

A combined open-label extension (OLE) study enrolled 412 patients with DS or LGS who had participated in three previous fenfluramine studies, reporting no new or unexpected safety signals and long-term sustained benefit.[2]

BARRIERS AND BENEFITS OF IDENTIFYING PATIENTS WITH DEES IN ADULT CARE SETTINGS:

Although the diagnosis of DEEs in children has become routine, significant diagnostic gaps remain for adults. This 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 (QoL), enhance communication and reduce risk of hospitalization for patients.[4]

UNPREDICTABLE SEIZURES AND DISRUPTIVE BEHAVIOR IN DEES: INTERIM RESULTS OF A CAREGIVER SURVEY:

An internet-based anonymous 63-question survey was distributed to caregivers of patients with DEEs by multiple DEE-specific patient groups. Nearly half of caregivers reported that high rates of disruptive seizures/behavior led to temporary loss in abilities, previously associated with reduced quality of life.[3]

PROLONGED SEIZURES:

* 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.[7]
* Real-world data from Adelphis Prolonged Seizure Disease Specific Programme™ characterizes the definition, prevalence, and patient population of prolonged seizures finding that people living with epilepsy experiencing prolonged seizures encounter significant seizure worry due to their seizure. In addition, these seizures regularly progress to status epilepticus and/or seizure clusters, leading to emergency care and hospital admissions, despite best practice.[5]
* A post hoc analysis of video-EEG recordings from 725 patients explores seizure duration and time-point cutoffs for statistically defining possible and probable prolonged seizures by seizure type, supporting the 2-minute cutoff for tonic-clonic seizures (focal/generalized onset) and suggesting a 1 to 3 minutes cutoff for other seizures, confirming that most seizure are abnormally prolonged at 2 minutes or less[6]
* SEIZURE PATHWAYS: A qualitative study aimed to understand the end-to-end care process for acute seizure emergencies finding 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.[8]
* ACUTE MEDICATION LANDSCAPE: A global analysis assessed the availability and reimbursement coverage of seizure acute medications for use in the outpatient setting.[9]

LENNOX-GASTAUT SYNDROME:

Diagnosing LGS is challenging 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.[10]

UCB-SPONSORED SYMPOSIUM: TIME MATTERS IN DEVELOPMENTAL AND EPILEPTIC ENCEPHALOPATHIES

* DATE: Monday, September 1st, 13:55 – 15:05
* OVERVIEW: The upcoming symposium aims to enhance knowledge and awareness of the broader impact of DEEs in adulthood – beyond seizure control. The session will focus on improving diagnosis, understanding treatment journeys and addressing barriers to care in order to drive better individual outcomes.

UCB PRESENTATIONS DURING THE INTERNATIONAL EPILEPSY CONGRESS (IEC) CONGRESS ANNUAL MEETING

Contact:
Global Communications: Anna Clark,
+44 07386 686779,
Anna.Clark@ucb.com; Corporate Communications: Laurent Schots,
+32.2.559.92.64,
laurent.schots@ucb.com; Investor Relations: Antje Witte,
+32.2.559.94.14,
antje.witte@ucb.com

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