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Research strategy

Informed by the UK Epilepsy Priority Setting Partnership (PSP) Top Ten priorities, our research strategy focuses on six key themes that will make the biggest difference to people affected by epilepsy. Under each of the six themes are specific priorities for researchers and research funders.

We will build an infrastructure that supports research, encourages shared learning and nurtures talent. We will harness enabling technologies, ensure research and clinical data is widely available to researchers, foster collaborations and attract early career researchers. Crucially, we will also ensure people affected by epilepsy are at the heart of all research and able to shape how studies are designed and delivered.

By developing the research environment and infrastructure, we enable researchers to address the questions most important to the epilepsy community.

Neurodevelopment

There is a complex interplay between seizures, cognition, memory and mental health. By increasing our knowledge of the link between epilepsy and neurodevelopment, and by improving our understanding of the overlap with neurodevelopmental disorders, we’ll be able to reduce the impact of the condition on people living with epilepsy, and their families.

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Advanced Therapeutics & Disease Modification

Developing treatments that effectively control seizures while minimising side effects is vital for people with epilepsy. By understanding the causes of epilepsy and the pathways involved in seizure generation, researchers will be able to develop personalised treatment options to maximise efficacy, minimise side effects and improve overall outcomes.

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Mortality, Risk & Morbidity

People living with epilepsy are up to three times more likely to die prematurely than those without the condition, and every day there are 3 epilepsy-related deaths in the UK. While many of these deaths are potentially preventable, we need to better understand the causes and be able to identify those who are at risk to prevent them. Through research we aim to reduce the mortality and morbidity of epilepsy, and enable risks associated with the condition to be more effectively managed.

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Reproduction & Hormones

Some anti-seizure medications (ASMs) are teratogenic – they are known to cause malformations in babies when they are exposed in utero. We do not know the mechanisms by which this occurs, nor do we understand the risk posed to children fathered by men taking ASMs, or if there are transgenerational effects. There is also limited evidence on the relationship between epilepsy and hormonal changes throughout the lifespan. Through research we aim to increase our knowledge and develop safer treatment options with fewer side-effects.

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Capacity Building

There are an estimated 600 researchers in the UK currently working in epilepsy. This is less than 10% of the number of researchers working in dementia. By strengthening and extending the network of epilepsy researchers, we hope to enable new multidisciplinary collaborations, foster research partnerships and drive greater research investment. Crucially, we also need to ensure people affected by epilepsy are at the heart of all research and shape how studies are designed and delivered.

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Enabling Technologies

For research to deliver life-changing breakthroughs it needs an environment where it can flourish. Knowledge and information needs an infrastructure that supports research, encourages shared learning, nurtures talent and promotes impact. We need to harness enabling technologies to ensure research and clinical data are appropriately consented and widely available and open to researchers, foster collaborations and grow the pipeline of epilepsy researchers.

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AMRC membership

Membership of the Association of Medical Research Charities (AMRC) is the hallmark of quality and credibility. It means we fund high-quality research that is associated with a published research strategy and has a robust peer-review process and a comprehensive conflicts of interest policy.

As members, our research procedures are audited every five years to ensure they meet the AMRC’s exacting membership standards. For universities, government and funding bodies, AMRC membership is a recognised indicator of quality. We also attend regular training alongside other research charities to develop best practice approaches and share learning.