UCB announced data being presented at the American Epilepsy Society (AES) Annual Meeting, taking place December 1-5 in Orlando, Florida, that focus on the real-world experiences of people living with rare epilepsy syndromes and their caregivers, in addition to several other presentations of clinical data evaluating the efficacy, safety and tolerability of FINTEPLA as a treatment for seizures associated with Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS). People living with a severe group of rare epilepsies called developmental and epileptic encephalopathies (DEEs), including DS and LGS, experience frequent and prolonged seizures, significant behavioral and developmental delays, movement and balance issues, and sleep difficulties.4 These ongoing challenges can create significant obstacles for both patients and their caregivers, as the conditions often require consistent and lifelong management to mitigate the dangerous side effects and detrimental impacts on quality of life. A critical element of care for people living with epilepsy and rare epilepsy syndromes is the continuous management of risk related to sudden unexpected death in epilepsy (SUDEP), a leading disease-related cause of mortality among people living with epilepsy, affecting approximately one in 1,000 adults with epilepsy yearly and one in 150 for those with inadequate seizure control.7 A systematic literature review of studies found a gap between what people living with epilepsy and their caregivers want regarding information about SUDEP and the information shared with them by their neurologists.

While many neurologists reported not actively discussing SUDEP to avoid causing fear or negative emotions, data show that patients and caregivers want to have more proactive discussions about SUDEP to provide them with the opportunity to take preventive measures. Increasing education for people with epilepsy and their caregivers about SUDEP, as well as providing neurologists with support and training to become initiated at initiating these difficult discussions, are critical to help build a trusting partnership to enhance epilepsy management and, in turn, reduce the risks of SUDEP. In addition to the other accepted posters at AES, UCB will present additional clinical data on FINTEPLA.

FINTEPLA is indicated for the treatment of seizures associated with Dravet Syndrome (DS) and Lennox theGastaut syndrome (L GS) in patients 2 years of age and older. FINTEPLA is available only through a restricted distribution program called the FINTEPLA REMS. Echocardiogram assessments are required before, during, and after treatment with FINTEPLA. FINTE PLA is available only through a restricted program called the FINTEPLA RemS.