Epilepsy is one of the most common neurological diseases affecting all ages of life, involving about 50-70 million people in the world of which 500 thousand in Italy alone. This disorder is more common in childhood and old age and, therefore, can interfere with normal activities at crucial stages of life. Scientific research has made enormous progress in diagnosis and treatment, in the last 15-20 years the number of available drugs has increased significantly, but there is still a lot to do, considering also the fact that about 30% of patients still have seizures that are not completely controlled by therapy and that over 30% of people with epilepsy suffer from drug-resistant forms of the disease. These issues were discussed during ‘Bright Connections‘, the conference organized by Ucb, today and tomorrow in Milan, with the aim of shedding light on the pathology and treatment options available by deepening the contribution of innovation in an absolute, technological and health sense.
The clinical condition of the epileptic patient – a note recalls – has in fact an enormous socio-economic impact correct diagnostic-therapeutic management is able to significantly improve all health and well-being outcomes for the patient and can minimize the impact of epilepsy on school / educational, social, work, emotional and recreational activities. About two thirds of the subjects affected by epilepsy in fact obtain a moderate control of the manifestations by means of antiepileptic drugs. Research and innovation therefore play a crucial role in ensuring further progress in the understanding and management of the different forms of epilepsy.
The conference organized by Ucb – a company for over 30 years has been committed to improving the lives of people with epilepsy, through the research and development of drugs – wanted to shed light on the pathology and treatment options available by deepening the contribution of innovation in absolute, technological and sanitary sense. The event was also an opportunity for discussion between clinicians on a national and international level to increase the knowledge and awareness of recent acquisitions in epilepsy and the latest data relating to the most recent anti-crisis drugs.
Ucb – the note details – constantly collects and publishes new data from studies dedicated to its portfolio of treatments: brivaracetam, lacosamide, levetiracetam and midazolam nasal spray (currently approved by the US Fda). Also in 2022 new real world evidence publications confirm the value of UCB’s commitment to people with epilepsy and their caregivers. Additionally, UCB’s recently confirmed acquisition of Zogenix signals an attempt to make a difference for the company in even rarer and more difficult-to-treat forms of epilepsy, such as Dravet syndrome.
From a recent study conducted by the Cerismas (Research and Studies Center in Health Management) of the Catholic University of the Sacred Heart with the support of Ucb Pharma, it emerged the importance of responding to the individual needs of the person with epilepsy also with organizational and technologically innovative solutions for services that are truly within the reach of the individual. For this reason, the conference also touched on the need to innovate both from an organizational point of view, starting from the functioning of the National Health Service itself, and from a technological point of view.
The Covid pandemic has brought out, in this regard, more and more clearly the need to introduce telemedicine in the management of epilepsy, as long as there are treatments that meet the characteristics of simplicity, speed and safety and are therefore more appropriate for use in telemedicine. Furthermore, televisions could be a valuable tool for carrying out check-ups, therefore for monitoring the progress of seizures, assessing adverse drug events, and making therapeutic changes. Finally, since epilepsy is an unpredictable pathology, it also needs the possibility of self-management by the patient which includes, for example, active self-monitoring with electronic diaries on the various devices such as smartphones, tablets or PCs, and passive monitoring with automated wearable devices to detect crises.
About this, Ucb has recently become the majority shareholder of Nile, an independent e-health company, born with the aim of facilitating the path of every person with epilepsy. Nile’s digital platform consists of an app for people with epilepsy, which allows them to be constantly connected with their care team, mitigating the feeling of uncertainty that the unpredictability of the disease tends to generate, as well as a portal for health workers, through which they can have an overall and immediate vision of the situation of each person being treated, guiding, with the support of data, the decisions to be made.
Another issue that has seen the experts most involved was that of Real world evidence, a fundamental tool in the perspective of a development of personalized medicine, also useful for the purpose of optimizing pharmaceutical expenditure and, for all these reasons, an innovative tool for health governance. This approach, made possible by innovative connections and networks between different centers, can help improve knowledge on medical performance, generate new evidence and respond to unresolved clinical needs by offering clear advantages, such as longer follow-ups than those of trials. standard and larger and more representative sample sizes.
“Ucb has developed a great deal of experience in epilepsy and is well aware of the challenges facing people who suffer from it,” he explained. Federico Chinni, CEO of Ucb Italia. “We are convinced that it is necessary to continue on this constant path of innovation on various fronts, on a scientific, organizational, therapeutic and technological level, to continue to improve treatment standards and, more generally, to respond increasingly to the unmet needs of people with epilepsy, ”he concluded.