Neurological disorders, like epilepsy, can have significant, life-altering implications for patients, their families and caregivers. Specifically, within the epilepsy field, there is a large unmet patient need as approximately 1 million people living with epilepsy are resistant to current treatments, with an estimated 160,000 of those patients being pediatric patients.1,2 At Jazz, we seek solutions for rare diseases and strive to provide better options for patients where limited or no treatments exist.
That is why I am pleased to announce our presence at the 2022 American Epilepsy Society (AES) annual meeting, where Jazz will present six abstracts showcasing Jazz’s commitment to providing important treatments for people living with rare forms of epilepsy.
At Jazz, we prioritize addressing the unmet needs for people living with rare and severe forms of epilepsy that can severely impact people’s everyday lives, such as Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS). DS is a rare genetic condition that appears during the first year of life with frequent fever-related seizures.3 Children with DS typically experience poor development of language and motor skills, hyperactivity and difficulty relating to others; these conditions are lifelong diseases with symptoms that evolve over time.3 Separately, LGS also begins in childhood with majority of patients beginning to have frequent seizures in early childhood, usually between ages 3 and 5.4 Almost all children with LGS develop learning problems and intellectual disability.4 Many also have delayed development of motor skills such as sitting and crawling, and most people with LGS require help with usual activities of daily living.4
Both rare forms of epilepsies not only affect those living with the disorder, but all those around them, including their caregivers. We’re proud to bring caregiver-reported evidence to the forefront of clinical research via two BECOME Caregiver Survey abstracts. The BECOME Caregiver Survey is a global outcomes survey of caregivers of patients with LGS or DS that characterized and quantified their impressions of seizure and non-seizure outcomes of treatment. The subgroup analysis elevates the multifaceted lived experience of epilepsy and valuable perspective of caregivers in continuing to improve care.5,6 Furthermore, it helps us better understand the effects of treatment across all age groups, so we can better respond to the needs of those impacted by these rare forms of epilepsy.
Separately, we will present findings of the utilization of the Refractory Epilepsy Screening Tool for LGS patients (REST-LGS Tool), which was designed to improve identification of patients with LGS. This condition is frequently undiagnosed in the adult population due to the lack of transfer of prior medical history to adult providers and the evolution of the symptoms of LGS over time. The results of this survey are an encouraging example of real-world use of the REST-LGS diagnostic tool. By identifying previously undiagnosed intractable epilepsy patients with potential LGS, care providers can explore further testing and specialized treatment options following a confirmed diagnosis.7
As we expand our pipeline and leadership in the neurology space, we continue to focus on people for whom we can have the greatest impact. Our research presented at AES 2022 is a testament to our ability to take bold steps to deliver therapies that create new or better standards of care for people living with serious conditions like epilepsy. We will continue to collaborate with researchers, scientists, chemists, developers, and others to advance our fields of study through our own proprietary programs and strategic cross-sector partnerships. For more information on Jazz’s presence at AES 2022, read our press release or follow along on Jazz’s Twitter and LinkedIn channels.
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