The Epilepsy Digital Experience Navigator, or EDEN, platform, is being developed in tandem with Embleema, with an aim of improving data use and collection for individuals with epilepsy.
The Epilepsy Foundation announced this week that it has entered into a collaboration with Eisai to develop a novel platform for individuals with epilepsy, dubbed EDEN (Epilepsy Digital Experience Navigator).1
The aim, according to the foundation’s announcement, is to provide these patients, their caregivers, and their clinicians with an improved method of data utilization for a smoother journey with the disease. The Epilepsy Foundation stated that it plans to have EDEN up and running by the fall of this year.
The EDEN platform is anticipated to enable those with epilepsy to easily connect to their care, as well as have access to resources and information that is individualized to their experience. The platform will both collect and analyze patient medical records, survey responses, and data from connected devices to develop real-world insights for clinical research in the effort to manufacture novel treatments, innovations, and means to the epilepsy community.
"The Epilepsy Foundation is committed to shaping the future of epilepsy research and leveraging technology to create greater efficiency in epilepsy care and treatment," said Jacqueline French, MD, chief medical and innovation officer, Epilepsy Foundation, in a statement. "Getting the right information to the right person at the right time is critical for successfully managing epilepsy. Our collaboration with Eisai empowers people with epilepsy to successfully manage their condition while contributing to research that we hope can help improve standards of care in the future for people living with epilepsy."
French, who is also director of Translational Research and Clinical Trials in Epilepsy at NYU Grossman School of Medicine, recently spoke with NeurologyLive in an interview for the Mind Moments podcast about the importance of improving not only the standards of care for individuals with epilepsy but the recognition of the condition of epilepsy in general, which occurs in 1 of every 28 individuals. She specifically spoke to findings of a recent study she conducted and the 5 S’s—short, sudden, strange, similar spells—that can help potentially identify nonmotor seizures. She clarified that for physicians, it is important to note that if a convulsion is reported, that inquiring about additional spells is critically important.2
Treatment and diagnosis delays have been a longstanding challenge for epileptologists. At the 2021 American Academy of Neurology Annual Meeting, April 17-22, Joseph Sirven, MD, and colleagues presented a study that evaluated the role of social determinants in these delays for Arizonans on Medicaid. They found that individuals with epilepsy diagnosed in inpatient settings or emergency departments had 2 times or 1.4 times, respectively, higher odds of being treated within 30 days compared to those diagnosed in office/clinic settings. Additionally, they found that factors such as care setting, age, marital status, race, homelessness, and employment all played significant roles that correlated with treatment delays. They wrote that these results underscore the need for a deeper understanding of the complex interplay of social determinants of health factors on epilepsy care, which to this point has been relatively under-researched.3
EDEN is planned to be powered by the technology platform developed by Embleema, a regulatory-grade health data platform that utilizes blockchain. Embleema will capture the clinical and real-world data, driven by patients, and according to the announcement “continuously delivers insights to multiple care and research stakeholders,” which may help to improve outcomes by streamlining the data interpretation process. Robert Chu, chief executive officer, Embleema, noted in a statement that the company was “delighted” to be part of the collaboration.
"For the first time, patients will be able to directly contribute to research by continuously sharing rich real-world insights with stakeholders in a fully remote and consented manner, while at the same time benefit from personalized digital services to better manage their condition," Chu said.
According to Embleema, providing those with epilepsy a way to stay on top of their disease both at home and on their mobile devices. The company noted that it prioritizes patient needs first, aiming for them to be “an equal voice in research” and able to receive multiple benefits from that research. EDEN, it notes on its website, was designed and developed fully based on patient feedback to build a system around those who will use it and derive the benefit from it.4
"At Eisai, everything we do is guided by our Human Healthcare mission, putting patients and their families first while we also listen and learn from them. We seek to enable people to live their fullest lives and continue to pursue the creation of solutions based on scientific evidence to help them achieve this," said Ivan Cheung, chairman, and global president, Neurology Business Group, Eisai, in a statement. "Partnering with the Epilepsy Foundation on the launch of EDEN continues our commitment to patients and families in the epilepsy community, as we together pursue and advance new epilepsy solutions."