[PRNewswire] UCB presents latest research and clinical advancement
-- Presenting 26 abstracts across leading epilepsy portfolio at International Epilepsy Congress
- 26 scientific abstracts, including two oral presentations, demonstrate UCB's 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]
BRUSSELS, Aug. 29, 2025 /PRNewswire=YONHAP/ -- 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 Adelphi's 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
┌───────────┬─────────────────────────┐
│Lead Author │Abstract Title │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│DEEs │
│ │
│ │
├───────────┬─────────────────────────┤
│Wilkinson AL, et al[3]│Oral presentation: Unpredictable Seizures and │
│ │Disruptive Behavior in Developmental and │
│ │Epileptic Encephalopathies: Interim Results of a │
│ │Caregiver Survey │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Specchio N, et al[10] │A checklist to support the diagnosis of Lennox- │
│ │Gastaut syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Rodriguez Solis B, et │Barriers and benefits of identifying patients with│
│al[4] │DEE in adult care settings? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Soto Insuga V, et │Improving Lives in Dravet Syndrome: Overcoming │
│al[11] │Challenges in the Family Journey? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lothe A, et al[12] │A Retrospective Claims Study Evaluating Mortality │
│ │in Patients With Lennox-Gastaut or │
│ │Dravet Syndromes in the United States? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Montero V, et al[13] │Lennox-Gastaut Syndrome. Situation analysis and │
│ │Family Journey.? │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Seizures │
│ │
│ │
├───────────┬─────────────────────────┤
│Trinka E, et al[5] │Describing the Population of Patients with │
│ │Prolonged Seizures: Results from a Global Real- │
│ │World │
│ │Point In-Time Study │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Sile B, et al[6] │Seizure Duration and Time-point Cutoffs for │
│ │Statistically Defining a Prolonged Seizure: A │
│ │Post-Hoc │
│ │Analysis of the SCORE Video-EEG Database │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Kaye D, et al[7] │Characterising Patient and Caregiver Experiences │
│ │Resulting from Prolonged Seizures │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Sain N, et al[8] │Understanding and Optimising the Seizure Emergency│
│ │Pathway │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Shafer P, et al[9] │Global Seizure Rescue Medication Landscape: │
│ │Availability & Reimbursement │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Fenfluramine │
│ │
│ │
├───────────┬─────────────────────────┤
│Nabbout R, et al[14] │Impact of Fenfluramine on Convulsive Seizure │
│ │Frequency in Dose-Capped Patients With │
│ │Dravet Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lagae L, at al[15] │A Stratified Analysis of Efficacy and Safety of │
│ │Fenfluramine in Patients With Dravet Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Wirrell E, et al[16] │Oral presentation: Real-World Use of Fenfluramine │
│ │for Dravet Syndrome: a Retrospective Cohort │
│ │Study Using a National Pharmacy Database │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Gjerulfsen CE, et │Non-seizure benefits of long-term fenfluramine │
│al[17] │treatment in pediatric patients with Dravet │
│ │syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Rosendahl A, et al[18]│Prospective evaluation of non-seizure benefits │
│ │related to treatment with fenfluramine in │
│ │pediatric and │
│ │adult patients with Dravet syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Schoonjans A, et al[2]│Tolerability and Safety of Fenfluramine and Global│
│ │Functioning of Patients in a Combined Open-label │
│ │Extension Study of Children and Adults With Dravet│
│ │and Lennox-Gastaut Syndromes │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lothe A, et al[19] │A European Study of the Effectiveness of Risk │
│ │Minimisation Measures for Fenfluramine Oral │
│ │Solution in Dravet Syndrome and Lennox-Gastaut │
│ │Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Dransfeld CR, et │Use of Fenfluramine and Cannabidiol in Daily │
│al[20] │Practice: A Retrospective Analysis of German │
│ │Prescription Claims │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Mittur A, et al[21] │Exposure-Response Relationships of Fenfluramine in│
│ │Patients With Dravet Syndrome and │
│ │Lennox-Gastaut Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Zuberi S, et al[22] │Post-hoc Analysis of Fenfluramine for Lennox- │
│ │Gastaut Syndrome by Baseline Frequency Quartiles │
│ │of Seizures Associated With a Fall │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Early pipeline: │
│ │
│ │
├───────────┬─────────────────────────┤
│Rodriguez N, et al[23]│AAV gene therapy at neonatal age in a mouse model │
│ │of STXBP1 haploinsufficiency │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Gomes AR, et al[24] │Rescue of neuronal activity in iPSC-derived STXBP1│
│ │in vitro disease models using viral vectors │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Niespodziany I, et │In vitro electrophysiological study of hippocampal│
│al[25] │network activity in a mouse model of │
│ │STXBP1 haploinsufficiency │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Herrewegen YVD, et │Expression and quantification of STXBP1 splice │
│al[26] │variants in rodent and primate brain tissues │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Brivaracetam[27] │
│ │
│ │
├───────────┬─────────────────────────┤
│Zafeiriou D, et │Brivaracetam Adjunctive Therapy in Paediatric and │
│al.[28] │Adult Patients With Focal-Onset Seizures in │
│ │Mid-European Countries: 12-Month, Real-World │
│ │Outcomes from the BRIVA-REG Study │
│ │ │
│ │ │
└───────────┴─────────────────────────┘
About UCB
UCB, Brussels, Belgium (www.ucb.com [https://www.ucb.com/]) 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 of the central nervous system. With approximately 9,000 people in approximately 40 countries, the company generated revenue of €5.3 billion in 2023. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCB_news [https://x.com/UCB_news].
Source: UCB
[※ Editor's note = This PRESS RELEASE was provided by the news provider, and Yonhap has not edited the content in any way, nor does it reflect the editorial direction of Yonhap.]
(END)
-- Presenting 26 abstracts across leading epilepsy portfolio at International Epilepsy Congress
- 26 scientific abstracts, including two oral presentations, demonstrate UCB's 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]
BRUSSELS, Aug. 29, 2025 /PRNewswire=YONHAP/ -- 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 Adelphi's 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
┌───────────┬─────────────────────────┐
│Lead Author │Abstract Title │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│DEEs │
│ │
│ │
├───────────┬─────────────────────────┤
│Wilkinson AL, et al[3]│Oral presentation: Unpredictable Seizures and │
│ │Disruptive Behavior in Developmental and │
│ │Epileptic Encephalopathies: Interim Results of a │
│ │Caregiver Survey │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Specchio N, et al[10] │A checklist to support the diagnosis of Lennox- │
│ │Gastaut syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Rodriguez Solis B, et │Barriers and benefits of identifying patients with│
│al[4] │DEE in adult care settings? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Soto Insuga V, et │Improving Lives in Dravet Syndrome: Overcoming │
│al[11] │Challenges in the Family Journey? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lothe A, et al[12] │A Retrospective Claims Study Evaluating Mortality │
│ │in Patients With Lennox-Gastaut or │
│ │Dravet Syndromes in the United States? │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Montero V, et al[13] │Lennox-Gastaut Syndrome. Situation analysis and │
│ │Family Journey.? │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Seizures │
│ │
│ │
├───────────┬─────────────────────────┤
│Trinka E, et al[5] │Describing the Population of Patients with │
│ │Prolonged Seizures: Results from a Global Real- │
│ │World │
│ │Point In-Time Study │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Sile B, et al[6] │Seizure Duration and Time-point Cutoffs for │
│ │Statistically Defining a Prolonged Seizure: A │
│ │Post-Hoc │
│ │Analysis of the SCORE Video-EEG Database │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Kaye D, et al[7] │Characterising Patient and Caregiver Experiences │
│ │Resulting from Prolonged Seizures │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Sain N, et al[8] │Understanding and Optimising the Seizure Emergency│
│ │Pathway │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Shafer P, et al[9] │Global Seizure Rescue Medication Landscape: │
│ │Availability & Reimbursement │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Fenfluramine │
│ │
│ │
├───────────┬─────────────────────────┤
│Nabbout R, et al[14] │Impact of Fenfluramine on Convulsive Seizure │
│ │Frequency in Dose-Capped Patients With │
│ │Dravet Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lagae L, at al[15] │A Stratified Analysis of Efficacy and Safety of │
│ │Fenfluramine in Patients With Dravet Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Wirrell E, et al[16] │Oral presentation: Real-World Use of Fenfluramine │
│ │for Dravet Syndrome: a Retrospective Cohort │
│ │Study Using a National Pharmacy Database │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Gjerulfsen CE, et │Non-seizure benefits of long-term fenfluramine │
│al[17] │treatment in pediatric patients with Dravet │
│ │syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Rosendahl A, et al[18]│Prospective evaluation of non-seizure benefits │
│ │related to treatment with fenfluramine in │
│ │pediatric and │
│ │adult patients with Dravet syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Schoonjans A, et al[2]│Tolerability and Safety of Fenfluramine and Global│
│ │Functioning of Patients in a Combined Open-label │
│ │Extension Study of Children and Adults With Dravet│
│ │and Lennox-Gastaut Syndromes │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Lothe A, et al[19] │A European Study of the Effectiveness of Risk │
│ │Minimisation Measures for Fenfluramine Oral │
│ │Solution in Dravet Syndrome and Lennox-Gastaut │
│ │Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Dransfeld CR, et │Use of Fenfluramine and Cannabidiol in Daily │
│al[20] │Practice: A Retrospective Analysis of German │
│ │Prescription Claims │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Mittur A, et al[21] │Exposure-Response Relationships of Fenfluramine in│
│ │Patients With Dravet Syndrome and │
│ │Lennox-Gastaut Syndrome │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Zuberi S, et al[22] │Post-hoc Analysis of Fenfluramine for Lennox- │
│ │Gastaut Syndrome by Baseline Frequency Quartiles │
│ │of Seizures Associated With a Fall │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Early pipeline: │
│ │
│ │
├───────────┬─────────────────────────┤
│Rodriguez N, et al[23]│AAV gene therapy at neonatal age in a mouse model │
│ │of STXBP1 haploinsufficiency │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Gomes AR, et al[24] │Rescue of neuronal activity in iPSC-derived STXBP1│
│ │in vitro disease models using viral vectors │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Niespodziany I, et │In vitro electrophysiological study of hippocampal│
│al[25] │network activity in a mouse model of │
│ │STXBP1 haploinsufficiency │
│ │ │
│ │ │
├───────────┼─────────────────────────┤
│Herrewegen YVD, et │Expression and quantification of STXBP1 splice │
│al[26] │variants in rodent and primate brain tissues │
│ │ │
│ │ │
├───────────┴─────────────────────────┤
│Brivaracetam[27] │
│ │
│ │
├───────────┬─────────────────────────┤
│Zafeiriou D, et │Brivaracetam Adjunctive Therapy in Paediatric and │
│al.[28] │Adult Patients With Focal-Onset Seizures in │
│ │Mid-European Countries: 12-Month, Real-World │
│ │Outcomes from the BRIVA-REG Study │
│ │ │
│ │ │
└───────────┴─────────────────────────┘
About UCB
UCB, Brussels, Belgium (www.ucb.com [https://www.ucb.com/]) 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 of the central nervous system. With approximately 9,000 people in approximately 40 countries, the company generated revenue of €5.3 billion in 2023. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCB_news [https://x.com/UCB_news].
Source: UCB
[※ Editor's note = This PRESS RELEASE was provided by the news provider, and Yonhap has not edited the content in any way, nor does it reflect the editorial direction of Yonhap.]
(END)
