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The UCB Post - US Neurology Epilepsy & Rare Syndromes
LETTER FROM THE US MEDICAL CONGRESS LEAD
Dear UCB Colleagues,
I’m pleased to bring you a summary of the key insights and takeaways from the 2025 American Academy of Neurology (AAN) Annual Meeting. Please note, the information shared here is intended for internal use only and should not be used in external discussions with healthcare providers.
With over 14,500 neurology professionals from across North America and beyond in attendance, AAN remains a premier event in our field—and a critical opportunity for us to track emerging neuroscience, clinical trends, and portfolio clinical pipelines. This year’s congress was especially exciting, with numerous sessions highlighting advances in various seizure disorders, rare neurological diseases, and innovative therapeutic strategies.
Our presence at AAN 2025 was robust and impactful—thank you to all onsite team members for representing us so effectively and special acknowledgments for our MSLs, Kameron Azarm and Mona Smith. Your engagements contributed to a highly successful participation. We continue to monitor and assess scientific findings and themes within our therapeutic area focus so that we are able to clearly communicate the distinct value of our product portfolios, and their differentiated benefits for patients and providers.
Let’s keep the momentum going and continue collaborating across teams to ensure our messaging, strategy, and scientific leadership are top of mind in this evolving landscape.
Thank you again for your dedication and contributions.
Kind regards,
Dilnaz Hassan, MD
Medical Enablement Lead /
Medical Affairs
US Neurology Epilepsy & Rare Syndromes
Dilnaz Hassan, MD
ATTENDANCE METRICS
>14500 AAN attendees
110 Countries
102 UCB attendees across entire organization (US and Global both RDO/EaRs)
22 UCB Neurology & Rare Syndromes attendees across entire organization (US and Global)
10 UCB Neurology & Rare Syndromes medical attendees across entire organization (US and Global)
 
UCB-SPONSORED EPILEPSY PROGRAM/EVENT METRICS
2 Industry Therapeutic Area Updates (Symposiums/Panel Discussions)
127 HCP attendees
~30 Unique HCP Engagements/Interactions (including FFA GSEP Dinner led by MSLs)
 
UCB EPILEPSY SCIENTIFIC POSTERS
15 UCB Scientific Poster Presentations
2 UCB Selected Scientific Poster Oral Podium Presentations (of the 15 total)
118 QR Codes Scanned
 
AAN SCIENTIFIC CONTENT METRICS
34 Relevant Scientific Sessions (seminars, hubs, courses, scientific poster sessions)
237 Total Epilepsy-related Abstracts Presented
25 High-priority Sessions Covered by Medical
26 High-priority Posters Covered by Medical
Pictured above: Oral Presentation by Almasa Bass, PharmD
Pictured above: Earlier Identification and Treatment of Patients with a DEE: Taking a Close Look at LGS ITU attendees. L-R: Michael Chez, MD, FAAN, FAES; Dilnaz Hassan, MD; Heidi Henninger, MD, FAAN; David Burdette, MD, FACNS; Rebecca Burns, PharmD
Pictured above: Rethinking Seizure Emergencies: Expert Perspectives on a New Paradigm. Top L-R: Hugo Xi, MD; Dilnaz Hassan, MD; Kamil Detyniecki, MD; Sheryl Haut, MD; Marc De Backer, MD; Cedric Laloyaux, PhD
SCIENTIFIC MEETING OVERVIEW
  • Epilepsy content was notable, in posters and educational sessions. Some key topics noted were focused on neonatal/pediatric EEG, ASM pharmacology, decision making in acute seizure management, and general updates in the epilepsy treatment landscape. Specifically, there was mention of FFA pro-cognitive effects and efficacy in DS considered quite remarkable. The mention of "STAP" and "REST" were observed to be spontaneously mentioned in other sessions (3 at the minimum) showcasing the interest and traction this topic is gaining from the external community. UCB sessions content highlighted LGS Diagnosis, FFA clinical experience and MOA, and the REST consensus
  • Primary epilepsy competitor activities were from Lundbeck with the platform presentation of bexi Ph1b/2a OLE and Neurelis’ posters on DZP-NS as a potential REST medication
  • Competitor presence was strong, and many companies that are pipeline manufacturers were well represented with prominent medical booth space that provided overviews of their entire Neurology product portfolios, with all disease states represented. This type of comprehensive presentation was a running theme. Additionally, many different examples of innovative educational content were available, including VR experiences, MOA videos, and pipeline presentations of data by HCPs (eg, Praxis)
KEY INSIGHTS FROM INDUSTRY THERAPEUTIC UPDATES
Earlier Identification and Treatment of Patients with a DEE:
Taking A Close Look at LGS
LGS
diagnosis
takeaways
  • Dx section focused on electroclinical features of LGS and showcased REST-LGS tool
  • Discussed the importance of referral
  • Discussed primary concerns of parents/caregivers of patients with LGS, highlighting the balance of priorities – reducing seizures balanced with patient alertness/cognition/awakeness
LGS
treatment
takeaways
  • Provided timeline of FDA approvals for LGS treatments
  • Highlighted these treatments as broad-spectrum to be able to target the heterogeneity of seizures in LGS
Key
insights
  • We received KSH feedback that the most valuable portion of the presentation was the discussion of LGS patient referral. They believe that many of the gaps in effective LGS diagnosis and care originate from the general neurologist caring for the patient for ‘too long’ and not appropriately tracking patient medical history. There is opportunity to continue educating on the importance of early referral in LGS care, to mitigate delayed effective diagnosis and treatment
Rethinking Seizure Emergencies—Expert Perspectives on a New Paradigm
SAP
takeaways
  • Reviewed examples of SAP from EF website and Penovich publication
  • Discussed clinical and economic risks of prolonged seizures
REST/ACT
consensus
and
treatment
takeaways
  • Discussed consensus definitions of REST and ACT, and audience was aligned via polling
  • Discussion around current off-label use of cluster rescue medications for prolonged seizures
  • During Q&A, discussion regarding STAP and the ongoing Phase 3 trial
Key
insights
  • KSH feedback was that they appreciated the comprehensive snapshot of seizure emergencies
  • Questions regarding Seizure Action Plans (SAPs)
  • One KSH was surprised that ‘prolonged seizures’ were not part of the nasal sprays’ current indication
UCB EPILEPSY & RARE SYNDROME SCIENTIFIC POSTER PRESENTATION TITLES
Disruptive Impacts of Developmental and Epileptic Encephalopathies on Patient and Family Life: A Quality-of-Life Survey
  • Authors: Martin M, Bailey LD, Dixon-Salazar T, Meskis MA, Manzo AM, Lothe A, Wilkinson A
Experiences of Women of Childbearing Age with Epilepsy Throughout their Motherhood Journey: Results From a Social Media Listening Study
  • Authors: Manzo M, Baker GA, Koncz A, Shell M, Werhahn KJ, Wilkinson A, Smith JK, Bourikas D
Impact of Prolonged Seizures on Patients’ and Caregivers’ Quality of Life
  • Authors: Kaye D, Manzo M, Wilkinson A, Laloyaux C, Burns R, Pina-Garza JE, Sirven JI, Bhatia T, Cunneen S, Meitzler S, Linn S
Sleep Apnea is Associated with High Mortality Risk in Children with Severe Epilepsies: Observational Analysis from Large Scale US Claims Data (ORAL SELECTION)
  • Authors: Dedeurwaerdere S, Lloyd D, Davis A, McLinden M, Van Zÿl J, Lothe A, Clark C
Interim results of the US fenfluramine oral solution cardiovascular safety registry study (ORAL SELECTION)
  • Authors: Bass A, Morita D, Shepherd-Smith J, Zhang-Roper R, Gitelson A, Tselenti E, Lothe A, Roberts J, Nayak N
Safety and Effectiveness of Fenfluramine for the Treatment of Seizures in Lennox-Gastaut Syndrome: Results From the Final Analysis of the Open-Label Extension Study
  • Authors: Knupp KG, Scheffer IE, Ceulemans B, Sullivan J, Nickels K, Lagae L, Guerrini R, Zuberi SM, Nabbout R, Riney K, Lock M, Dai D, Davis R, Morita D, Lothe A, Langlois M, Zhang-Roper R, Minh T, Gil-Nagel A
Impact of Fenfluramine on Convulsive Seizure Frequency in Dose-Capped Patients With Dravet Syndrome
  • Authors: Nabbout R, Knupp KG, Lagae L, Cross JH, Sullivan J, Gil-Nagel A, Guerrini R, Strzelczyk A, Langlois M, Healy P, Lothe A, Scheffer IE
A Stratified Analysis of Efficacy and Safety of Fenfluramine in Patients With Dravet Syndrome
  • Authors: Nabbout R, Sullivan J, Auvin S, Ceulemans B, Cross JH, Devinsky O, Gil-Nagel A, Guerrini R, Knupp KG, Perry MS, Sanchez-Carpintero R, Scheffer IE, Specchio N, Strzelczyk A, Wheless J, Wirrell EC, Morita D, Langlois M, Healy P, Lothe A, Lagae L
Understanding Incidence, Prevalence, Characteristics, and Healthcare Resource Utilization for Patients With Dravet and Lennox-Gastaut Syndromes
  • Authors: Ameen R, Sullivan J, Wirrell EC, Boehme A, Zhang-Roper R, Healy P, Lothe A, Kerr WT
A retrospective claims study evaluating mortality in patients with Lennox-Gastaut or Dravet syndrome in the United States
  • Authors: Ameen R, Wirrell EC, Sullivan J, Zuroske T, Grochowski D, Gupta S, Zhang-Roper R, Lothe A, Kerr WT
Long-term Tolerability and Efficacy of Adjunctive Brivaracetam in Pediatric Patients with Primary Generalized Seizures: Subgroup Analysis of an Open-label, Follow-up Trial
  • Authors: Lagae L, de la Loge C, Elmoufti S, Elshoff JP, Moseley B, Pucylowski K, Bourikas D
Safety, Tolerability, Pharmacokinetics, and Efficacy of Fenfluramine in Combination With Cannabidiol: Results From a Phase 1 Study
  • Authors: Zhang-Roper R, Mittur A, Boyd B, Langlois M, Evans S, Morita D, Phillips S
Inhalation as an Efficient Delivery Route of Alprazolam for the Treatment of Acute Seizures: Randomized Study of Staccato® Alprazolam Compared to Oral Alprazolam
  • Authors: Goldwater R, Daniels T, Ford A, King A, Laloyaux C, Chanteux H
Real-world Use of Fenfluramine for Dravet Syndrome: a Retrospective Cohort Study Using a National Pharmacy Database
  • Authors: Lhatoo SD, Kerr WT, Wirrell EC, Donner E, Sullivan J, Guerrini R, Scheffer IE, Rheims S, Cross JH, Lagae L, Ryvlin P, Gil-Nagel A, Noebels JL, Roberts J, Lothe A, Tryfon M, Rañopa M, Devinsky O
Brivaracetam Monotherapy Patient Characteristics, Treatment Patterns, and Healthcare Resource Utilization Among Patients With Epilepsy: A Cohort Study Using US Claims Data
  • Authors: Numbere B, Besson H, Kuba A, Bourikas D, Pucylowski K, Little A, Moseley B
Poster Sessions    Oral Presentations
The UCB Post AAN 2025 Newsletter
 
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DO NOT DISTRIBUTE OR USE FOR DISCUSSIONS EXTERNALLY.

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