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12 February 2019

Health Secretary endorses unique partnership forged by Epilepsy Society and pharmaceutical UCB

Health Secretary Matt Hancock has endorsed a unique partnership forged by UK charity Epilepsy Society and Brussels based biopharmaceutical company, UCB.

Matt Hancock dressed in a suit

The partnership brings hope of better diagnosis for epilepsy based on a person’s individual DNA, and more personalised treatment options for those whose seizures do not respond to current treatment options. It could mean a seizure free life in the future for many of the 200,000 people with epilepsy in the UK living  with uncontrolled seizures.

Matt Hancock has given his firm assurance that this year seriously ill children and adults with genetic conditions will be offered DNA analysis as part of their routine treatment.

He said: “Genomics has an incredible potential to transform healthcare by diagnosing diseases earlier and providing truly personalised treatments to patients. So I’m hugely excited about the opportunities this partnership offers to change peoples’ lives for the better.

“We are already leading the world through the 100,000 Genomes Project and this investment is a further vote of confidence in our strong life sciences sector.

“I’m determined to do all I can to harness this life-saving technology and as part of our Long Term Plan for the NHS this year seriously ill children and adults with genetic conditions, including cancer, will be offered DNA analysis as part of their routine care.”

Over the next five years the Epilepsy Society and UCB will work collaboratively to develop an improved and deeper understanding of the complex nature of epilepsy through genome sequencing and analysis of genetic biomarkers.

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 presents an unparalleled opportunity to progress knowledge and understanding about a much misunderstood condition.

The charity's genetic research has already begun to change lives. Danny, 33, and Billy Knight, 29, from Essex have lived with uncontrolled seizures, often experiencing as many as 1,000 seizures a day. It was only when the Epilepsy Society team investigated the young men's genetic make-up that they were able to diagnose and treat a rare underlying creatine deficiency which had resulted in problems including developmental delay, learning disabilities, epilepsy and challenging behaviour.

Now, thanks to the prescription of high-dosage creatine supplements, both brothers are seizure free.

"This has made an enormous difference to their quality of life," said their father Richard Knight. "Had they been diagnosed sooner, there's a very good chance that the boys would've led a reasonably normal life and probably would not have had epilepsy. Hopefully, this will encourage more people with epilepsy to seek treatment."

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.