The Epilepsy Society and UCB, a global biopharmaceutical company headquartered in Belgium, with a significant UK R&D hub in Slough, UK, have announced an exciting new collaboration to progress understanding of the genetic components of epilepsy, treatment responses and the impact on patient experiences through pioneering whole genome sequencing.
The hope is that research could ultimately result in improved and better targeted treatments for people with epilepsy which, in turn, could enable them to live their lives to the full.
With a specific focus on people who do not respond to currently available epilepsy medicines, the two organisations, who, in the UK, are located within 10 miles from each other in the South East of England, will work collaboratively over the next five years to develop an improved and deeper understanding of the complex nature of epilepsy, leveraging the recent technological advances in the field, such as genome sequencing, machine learning approaches and analysis of genetic biomarkers.
The first phases of the collaboration will focus on generating and analysing individual categories of data that have a role in determining a potential drug response, with an initial focus on the role of genetics. In the latter phases, the emphasis will move towards integrating different types of data sets and understanding how they act together. In this way, it is hoped to build a more complete picture of the drivers of treatment resistance in epilepsy, which will allow the exploration of ways to predict and treat it.
The long-term aim of the collaboration will be to use key insights from the research to design and develop improved, personalised approaches to the management of epilepsy, tailored to specific patient needs and genetic characteristics.
Professor Sanjay Sisodiya, Professor of Neurology at UCL and the Epilepsy Society’s Director of Genomics, who is leading the research partnership within the charity said, “Advances in genomics present exciting potential for a paradigm shift in epilepsy. We hope to use them to gain a much better understanding of the disease trajectory, improving diagnosis and treatment for people living with epilepsy. Our hope is that by embracing genomics we will be able to provide personalised care for patients, eventually helping us to identify the right treatment, first time.”
What makes the Epilepsy Society/UCB collaboration unique is the detailed clinical data that it is able to harness. Epilepsy Society’s Chalfont Centre in Buckinghamshire provides tertiary care for people with the most severe and uncontrolled epilepsy, often those who may feel little hope of ever living a seizure-free life. Its integrated medical care and clinical research present an unparalleled opportunity to progress knowledge and understanding about a much misunderstood condition.
Clare Pelham, Chief Executive of the Epilepsy Society, said: “Our goal is that epilepsy should be as insignificant in a person’s life as perhaps having freckles – no impediment to living a full life, driving a car or holding down a demanding job. We really believe that genomics gives us the tools to make this a reality and we are delighted to be collaborating with UCB, bringing together our cutting-edge science and world class technology. Already in clinics we are making diagnoses that are changing people’s lives, giving those whose days have been overshadowed by the possibility of a seizure, the chance of a seizure-free, and a care-free, life. And that is immense. We hope, in the future, this sort of diagnosis will become available to everyone across the UK.”
“Working together with the Epilepsy Society we now have an exciting opportunity to develop unique insights into this condition, which will provide a platform to inform our scientific and drug discovery approaches” explained Dr Dhaval Patel, Executive Vice President and Chief Scientific Officer at UCB. “We hope this collaboration could help in the development of tools to better identify difficult to treat patients earlier, and ultimately to develop tailored and targeted medicines which could bring significant value to these patients in the future.”
UCB will invest around €2.5 million over the course of the collaboration, which will be a key part of the pharmaceutical company’s wider commitment to maintain the UK’s position as a leading force in life sciences. This announcement follows UCB’s decision to invest £1 billion into the UK life-sciences sector over the next five years, which includes building its new R&D site in or around the Slough area.
This collaboration will also build on NHS England’s 10 Year Plan, which highlighted genomics as a key area for investment, outlining its aim to be the first national health care system to offer whole genome sequencing as part of routine care.
Announcement of this collaboration coincides with International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), which aims to raise awareness and understanding about epilepsy around the world.