GOING FURTHER - Epilepsy Research UK

GOING FURTH R TO ADVANCE THE SCIENCE OF EPILEPSY

Our strategy to drive investment into epilepsy research 2020 -2025

GOING FURTH R The power to prevent epilepsy has so far eluded us. The inequalities in research funding of epilepsy has meant progress has been slow. There is still much we don’t know about epilepsy and research investment continues to lag behind other less prevalent neurological conditions.

We need to go further than we’ve ever gone before to drive the changes so urgently needed to strengthen and expand the landscape of epilepsy research. This is our strategy to do exactly that.

In setting out our research priorities we will listen to people affected by epilepsy - but we need to go further than that. Our strategy is not just about listening, it’s about actively involving people in research. Through our SHAPE NETWORK we will create a powerful community of people, who

together will drive and enable life changing, life saving research into epilepsy.

Research breakthroughs require funding, but it’s not just about the research we fund - we need to go further than that. Knowledge and information need an infrastructure that supports research, encourages shared learning and nurtures talent.

We need to create an environment for research to flourish. Our strategy details how we will capacity build epilepsy research to accelerate progress in the field.

The task ahead is significant. We can’t do it on our own - we need to go further than that. We will focus on building collaborations to maximise the impact of our collective efforts. This is not a time for working alone– the task ahead is too important.

600,000 people in the UK are living with epilepsy

30%

For people living with epilepsy, every day counts. Every study is a step forward in our understanding. And every collaboration is strengthening efforts against the devastation of epilepsy on adults and children.

of people live with uncontrolled seizures that do not respond to medication

We believe this strategy will help cultivate greater investment in epilepsy research. It’s time research into epilepsy levelled up. And it starts here.

In 65% of people there is no known cause

Professor Matthew Walker Chair of Trustees

Maxine Smeaton Chief Executive

WHAT’S AT STAKE? LIVES

The lives of 600,000 who are currently living with epilepsy in the UK.

BILLIONS

The £1.5 billion epilepsy costs the NHS every year.

BREAKTHROUGHS SO FAR Treatments and surgical techniques for specific types of epilepsy Developments in antiepileptic drugs – there are now around 28 drugs commonly used. Surgical techniques have been successful in reducing seizure frequency in suitable patients.

Devices that can modulate brain activity to reduce seizure frequency Including vagus nerve stimulation (VNS), which was identified following decades of extensive research.

Advanced neuroimaging to identify brain abnormalities Developments in brain imaging mean that we can not only pinpoint the source of seizures, but predict seizure freedom and cognitive outcomes.

Around 1,000 protein-coding genes have been linked to epilepsy Identifying the specific genetic causes of epilepsy can help ensure personalised treatments with fewer side effects.

YET TO BREAK THROUGH

30% OF PEOPLE LIVE WITH UNCONTROLLED SEIZURES

IN 65% OF PEOPLE THERE IS NO KNOWN CAUSE 65%

Underlying causes For 65% of people there is still no known cause for their epilepsy

Drug-resistant epilepsies 30% of people with epilepsy still have uncontrolled seizures that do not respond to medication

21 EPILEPSYRELATED DEATHS EVERY WEEK

Underlying mechanisms of SUDEP Tragically, there are 21 epilepsyrelated deaths every week, of which SUDEP (Sudden Unexpected Death in Epilepsy) accounts for half

How to prevent epilepsy from interrupting, disrupting and, tragically, ending lives.

Epilepsy Research UK is the only voluntary sector organisation exclusively dedicated to funding research into epilepsy in the UK. We are currently supporting over 58 projects in academic and clinical institutions throughout the UK with collaborations across the world. State of the art electronic brain recording, new ways to treat brain cells to develop gene therapies and improved ways to monitor seizures are just a few examples of the research advances that have happened because of our investment.

Dr Rob Wykes University College London University of Manchester

THE FUNDING PROBLEM – AN UNBALANCED EQUATION Our #ALifeInterrupted campaign shines a light on the lack of funding in epilepsy research compared to investment in other conditions, both in the UK and the rest of the world.

Despite being one of the most prevalent and serious neurological conditions, research into epilepsy receives only 7% of neurological research funding and just 0.3% of the £4.8 billion total spent on health-related research in the UK. At a time when the need to make savings is paramount, there is a compelling case to invest more in epilepsy research - the return on investment could lead to substantial cost-savings to the NHS and will make an enormous difference to those affected.

Through our #ALifeInterrupted campaign we are seeking to address this imbalance by lobbying government, industry, institutional funders, major trusts and foundations for increased investment in epilepsy research. If we are to be successful, we must first evidence the needs of people living with epilepsy, provide accurate data about the numbers of people affected, and develop research priorities that have been identified by people living with the condition. This evidence must be obtained through an independent, credible and rigorous process and from multiple sources.

We will commence this work in 2021 by undertaking a James Lind Alliance Priority Setting Partnership and at the same time will set to work on reviewing the prevalence statistics last updated in 2011. By commissioning this research, we will produce the body of evidence required to deliver on our own strategy but also to inform the work of all epilepsy charities, institutional funders, clinicians and scientists.

LEVERAGING MILLIONS Our investment in research over the last five years has leveraged an additional £21.2 million in follow-on funding from other sources.

Every £1 invested by Epilepsy Research UK has generated a further £5.82 from institutional funders.

£1

£5.82

#ALifeInterrupted Epilepsy interrupts the lives of ordinary, extraordinary people.

It’s invisible. It’s unpredictable. It’s frightening.

A life free from epilepsy is possible But only through research

Professor Stephanie Schorge University College London

THREE STRATEGIC PRIORITIES OUR TARGETED APPROACH To achieve our vision of a life free from epilepsy we have three strategic priorities to support driving and enabling life changing, life saving research. To direct our activities, we will involve the epilepsy community and maximise resources to deliver benefits to people living with epilepsy as quickly as possible.

PRIORITY

1

PRIORITY

2

PRIORITY

3

Promote, encourage and fund research into the causes, diagnosis and treatment of epilepsy, and clinical management of people with epilepsy and associated conditions.

Develop the next generation of epilepsy researchers and capacity-build the epilepsy research environment.

Accelerate innovations for people with epilepsy by supporting and commissioning research that will influence clinical practice and health policy.

PRIORITY

1

PROMOTE, ENCOURAGE, FUND RESEARCH

We will continue to fund the most promising research into the causes, diagnosis and clinical management of epilepsy, but we will go further than that to ensure our efforts don’t just help ERUK-funded researchers, but will help all epilepsy researchers, charities and research funders.

We will close the gaps in knowledge. We will gather a national picture of the impact of the condition on people with epilepsy, identify the priority areas for research and empower people to engage in research activities.

Taking away the worry that I won’t wake up and see tomorrow. Solving SUDEP.

Fund strategic partnership initiatives Gather accurate prevalence data

Research into the causes, diagnosis & treatments of epilepsy

Gather evidence of need

Research priorities identified by people with epilepsy

1

PROMOTE, ENCOURAGE, FUND RESEARCH

SHAPE EPILEPSY RESEARCH NETWORK We will build the largest ever community of people affected by epilepsy to influence and shape research. Our SHAPE NETWORK will involve people with epilepsy in all aspects of epilepsy research, from identifying and evidencing research priorities to making decisions on the projects we fund.

If my medication side effects were to leave. That would be life-altering. I would be able to function normally for the first time in nearly 9 years.

JAMES LIND ALLIANCE PRIORITY SETTING PARTNERSHIP We will embark on a Priority Setting Partnership with the James Lind Alliance to identify and prioritise the top ten unanswered research questions in epilepsy. This process will provide a rare and valuable opportunity for patients and clinicians to shape the

health research agenda together. We will widely share the top ten list of jointly agreed research priorities, to inform researchers, research funders and fellow epilepsy charities about priorities, so that they too can fund research most important to people living with epilepsy.

PREVALENCE AND INCIDENCE STUDY There is a huge gap in knowledge on the prevalence and incidence of epilepsy, with existing data over ten years old. We will conduct a prevalence and incidence study to provide much-needed evidence of the overall burden of the condition. This will help inform healthcare innovations and support our influencing activities to lobby institutional funders and government to invest more in epilepsy research.

BUILDING ON A SOLID FOUNDATION With the information gathered from the above three programmes of work, we will develop a research strategy that will clearly identify the types of research and scientific areas we will promote and support.

SH A P

E PILE P SY RESEARCH

NETWORK

PRIORITY

2

CAPACITY-BUILD THE EPILEPSY RESEARCH ENVIRONMENT

We will continue to encourage the best and brightest minds to focus on epilepsy research, but we will go further than that to ensure ideas and discoveries are widely shared so that research can thrive.

We will nurture and support the best researchers at all career stages, from PhD students to Professors, building future generations into international leaders.

Connecting people with epilepsy & researchers through the SHAPE NETWORK

Doctoral Training Centres

2

Develop the next generation of epilepsy researchers

Sharing data and discoveries

International expert workshops

CAPACITYBUILD THE EPILEPSY RESEARCH ENVIRONMENT

FELLOWSHIP AWARDS Our fellowship awards allow us to attract the best clinicians and researchers, develop their scientific expertise and place them at the heart of epilepsy research. This commitment to supporting the careers of researchers through these awards is helping to strengthen epilepsy research capacity in the UK. DOCTORAL TRAINING CENTRE PARTNERSHIPS Through this programme we are partnering with academic institutions and will support up to twelve PhD students to investigate the causes, diagnosis or treatment of epilepsy and associated conditions.

SHARING THE DATA AND DISCOVERIES Alongside attracting the best minds we will grow, connect and capacity-build our network of epilepsy researchers and ensure ideas, data and discoveries

My Fellowship award shaped my scientific development more than any other award and set my research direction along a path that continues to this day.

Without it I simply would not have been drawn to epilepsy research.

Professor Liam Gray Professor of Neurosurgery Cardiff University

are shared quickly to help build on the growing body of information about epilepsy. We will work with our funded researchers to ensure that demonstrating and communicating impact is a key requirement of their funding.

By encouraging information sharing it enables researchers to build upon and further develop the work of others. It is through this work that we will help speed up research progress and accelerate the pace of discoveries.

INTERNATIONAL EXPERT WORKSHOPS Our biennial International Expert Workshop brings together world-class researchers. We will continue to create opportunities to bring together the world’s leading researchers in one place to share ideas and expertise.

PRIORITY

3

ACCELERATE INNOVATIONS FOR PEOPLE WITH EPILEPSY

Until we are able to prevent epilepsy our priority is to use our expanding knowledge of the condition to better meet the needs of people with epilepsy, reduce side effects and provide more effective treatments.

Co-funding initiatives with associated conditions charities Advocacy – the voice of people with epilepsy Commissioning & funding research to influence health policy & practice Culture of collaboration

Policy influencing from research evidence

3

A membership alliance for rare epilepsies

ACCELERATE INNOVATIONS FOR PEOPLE WITH EPILEPSY

FOSTERING A CULTURE OF COLLABORATION Innovation involves more than just scientific research and discovery. Innovation is focused on bringing new thinking and ideas to the benefit of people living with epilepsy as quickly as possible. To do this we must collaborate.

We have a history of creating new partnerships around a common purpose to support advances in clinical care, conduct research and influence policy and practice. This work needs to go further in order to deliver real outcomes for people with epilepsy.

We will strengthen the epilepsy research community by partnering with other organisations with whom we share a common purpose and values.

We will seek to collaborate on evidence building, priority setting and research funding. This is not about competing interests. This is about the entire community working together to transform epilepsy research.

SHAPE EPILEPSY RESEARCH ALLIANCE We will set up an epilepsy research membership body for rare epilepsies and associated conditions to give a greater voice to types of epilepsies that

often get overlooked. By joining together under one membership body, we will strengthen our ability to influence and fund research that will make a difference to people with rare types of epilepsy.

INFLUENCING FOR ACTION As the only dedicated UK voluntary sector organisation funding epilepsy research, our role provides us with opportunities to engage and influence a wide variety of organisations and institutes across academia, industry and government. We will ensure our influencing is backed up with evidence, so that we can make a compelling and informed case to create the best conditions in which scientific research can flourish.

FUNDING OUR PROGRAMME Our ability to have a positive impact for people with epilepsy has always depended on the extraordinary generosity of our supporters. We appreciate everything every individual does to raise awareness and provide us with the money we need to deliver our mission.

To deliver the goals of this strategy we will need to raise £10 million over the next five years.

As scientists we know that each increment in knowledge, every marginal gain, when added together can make big differences to the lives of people with epilepsy.

Professor Sameer Zuberi Consultant Paediatric Neurologist Royal Hospital for Children Honorary Professor at the University of Glasgow

HELP US DELIVER Each and every epilepsy breakthrough demonstrates the huge potential of research to achieve our vision of a life free from epilepsy. Quite simply, there has never been a better time to harness the recent, unprecedented advances in science, medicine and technology for the benefit of people living with this cruel condition.

From across research charities, the health service, academia, government, supporters, industry and beyond - we are calling on the nation to get behind our strategy and help us deliver on our promises.

Charity Number 1100394

CAN Mezzanine 7-14 Great Dover Street London SE1 4YR

E info@eruk.org.uk T 020 3096 7887 epilepsyresearch.org.uk

In the next ten years we can get closer to ending epilepsy forever. But we can’t do it alone. Please join us.