Over the past decade, we’ve seen research deliver significant advances in the treatment and care of epilepsy. Each and every breakthrough demonstrates the huge potential of research, but there is still much to do. We believe the key to accelerating further progress is the involvement of people living with epilepsy, their carers and families in research. There is growing recognition that Patient and Public Involvement (PPI) in research leads to higher-quality studies and better outcomes.

Our SHAPE NETWORK will be the UK’s largest ever patient population of people affected by epilepsy who want to be involved in research. It will provide an opportunity for people with epilepsy, their carers and families to get involved in all aspects of research, from identifying and evidencing priorities to making decisions on the projects we fund. The guidance from experts by experience when designing, implementing and evaluating research will make studies more effective, more relevant and more cost-effective.

Through this network, we will ensure research is focused on the most important outcomes for people living with epilepsy and will provide the evidence needed to secure greater research funding.

Benefits of the SHAPE NETWORK:

People living with epilepsy

  • Offers potential to gain faster access to new treatments and increased monitoring
  • Creates an opportunity to help others affected
  • Increases knowledge about the condition
  • Provides an opportunity to take an active role in helping to achieve a life free from epilepsy

If your life has been interrupted by epilepsy, you can help shape the future of research. Please complete these questions join the SHAPE NETWORK.

JOIN THE SHAPE NETWORK

Researchers

  • Provides immediate access to a large and diverse group of patients to assist with prioritisation, study design and delivery
  • Ensures research is focused on the needs of people affected by epilepsy
  • Improves patient experience, trial recruitment and retention
  • Creates stronger funding applications

Researchers should contact our Head of Research, Caoimhe Bennett, to gain access to the benefits of the SHAPE NETWORK.

Contact Caoimhe

Research

  • Improves the relevance and quality of scientific research
  • Makes for more impactful research
  • Provides evidence to secure further research investment
  • Accelerates innovations and developments

Read more about the impact and importance of patient participation in our Research Blog on PPI.

Research Blog

A new national PPI service for epilepsy researchers

The SHAPE NETWORK will provide a new national PPI service to all clinical and scientific researchers undertaking research into epilepsy in academic and clinical institutions throughout the UK. This service to researchers will facilitate and manage the involvement of people living with epilepsy in research. It will also cultivate much closer cooperation between people living with epilepsy and epilepsy research communities.

The network will help epilepsy researchers with:

  • Grant applications
  • Priority setting exercises
  • Participating in research project steering groups
  • Providing feedback on research grant proposals and clinical trial protocols
  • Reviewing research participant information
  • Taking part in consultations
  • Co-designing research papers

Researchers should contact our Head of Research, Caoimhe Bennett, to gain access to the benefits of the SHAPE NETWORK.

Contact Caoimhe

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
Honorary Professor, University of Glasgow

If your life has been interrupted by epilepsy – you can shape the future of research.

We want to build the biggest ever community of people living with epilepsy to influence and shape research.

Your involvement today is vital in helping us to unlock further progress. Your involvement will help us build relationships that will result in greater investment. Your involvement will help us gather the evidence we need to call on the government to do more. Your involvement will speed up progress to stop the interruption epilepsy has on your life.

To get things started, we’d like you to complete this short questionnaire. We’ve worked with the wonderful Epilepsy Nurses Association to put together a few questions that will give us some insights into your priorities as someone living with epilepsy. There are four questions, which should only take a few minutes to complete. We would just like to reassure you, we will never share your data. You can read our Privacy Policy here.

HAVE YOUR SAY QUESTIONNAIRE

  • AS THE LEADING RESEARCH CHARITY FOR EPILEPSY, WHAT PROPORTION OF FUNDS SHOULD WE ALLOCATE TO:
  • Please enter a number from 0 to 99.
  • Please enter a number from 0 to 99.
Register With Your Email Address
  • If you are interested in joining the 'Shape Epilepsy Research Network' please select here
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  • Opt in for updates on this campaign and other ERUK news here
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Or Register Using Social Media
  • If you are interested in joining the 'Shape Epilepsy Research Network' please select here
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  • To stay informed about research in the areas you have selected and other ERUK news, please grant us permission to contact you by opting in here.
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What happens next?

The information you provide will help us to build our SHAPE EPILEPSY RESEARCH NETWORK. Once you’ve completed the questionnaire, you can then decide if you’d like to get more involved.

Our plan is to include people with epilepsy in all aspects of research, from identifying and evidencing research priorities that will have the greatest impact for people living with the condition, to making decisions on the projects we fund.

This is important because:

  • Only by involving people living with epilepsy can we ensure we are funding research that matters most to the people affected
  • Building a strong and engaged community group will help us to build productive relationships with research organisations and accelerate the development of new treatments
  • It will enable us to generate evidence to use to lobby government for increased research investment

You can shape the future of research into epilepsy

The SHAPE EPILEPSY RESEARCH NETWORK will bring together everyone committed to working towards a life free from epilepsy – from people living with the condition, to scientists and clinicians driving innovations and making discoveries. As part of the network, you can help shape research by:

  • Sharing the impact of the condition on your life
  • Helping ERUK choose the best research to fund
  • Planning and prioritising research areas to focus on
  • Using your experiences to support research development by informing study design and implementation

As a member of the SHAPE EPILEPSY RESEARCH NETWORK, we will ask you for your views and feedback on research through questionnaires and focus groups. You will also receive personalised emails about recent epilepsy research relevant to you, as well as upcoming research events and advance notice of opportunities for involvement in clinical trials or studies.

Together, we will create a connected and powerful network of people, who will drive and enable life changing, life saving research into epilepsy.

A life free from epilepsy is possible. But only through research.