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Get involved in research

Research needs people affected by epilepsy to get involved, which is why we’ve built our Shape Network - the UK’s largest group of people affected by epilepsy who are interested in research. We share opportunities for people with epilepsy, their family members and carers to get involved in all aspects of research.

Through the Shape Network you can:

  • LEARN about the science of epilepsy
    – We’ll share articles, videos and events for you to learn about research into epilepsy.
  • PARTICIPATE in research studies
    – We’ll share a range of different ways for you to participate in research, such as: completing a questionnaire, being interviewed by a researcher, giving a blood sample, having a brain scan or taking part in a clinical trial.
  • SHAPE research priorities and how studies are carried out
    – We’ll share opportunities for you to work alongside researchers to influence research into epilepsy. This could include helping to prioritise research questions, commenting on study documents, or helping to design how a study might be carried out.

Join our Shape Network to radically advance research into epilepsy. Your involvement helps to build relationships, increase investment into epilepsy research, accelerate the development of new treatments, and ensure that research is meaningful to people affected by epilepsy.

I am excited to be involved in the network as it offers a great opportunity for people living with epilepsy to have a direct impact on the types and quality of research that is carried out.
Rebecca, Shape Network member

Who can join the Shape Network?

Anyone aged 18 or older who is affected by epilepsy. This includes those diagnosed with epilepsy as well as partners, carers, parents and family members of those with epilepsy.

What happens when I join?

You’ll receive emails from us that include opportunities to learn about epilepsy, participate in studies and shape research. You can pick and choose which opportunities you’d like to get involved in, based on your availability and interests.

How do I join?

Complete the sign up form below.

JOIN THE SHAPE NETWORK

"*" indicates required fields

Register To The Shape Network

WHAT TOP 3 THINGS WOULD YOU WISH FUTURE EPILEPSY RESEARCH TO ACHIEVE?*

Fund Allocation

AS THE LEADING RESEARCH CHARITY FOR EPILEPSY, WHAT PROPORTION OF FUNDS SHOULD WE ALLOCATE TO:
Please enter a number less than or equal to 99.
Please enter a number less than or equal to 99.

About You

Email*

As a member of the Shape Network, we will ask you for your views and feedback on research through surveys, focus groups and paid involvement opportunities. You will also be the first to hear about upcoming research events and opportunities for involvement in clinical trials or studies.

As part of the network, you can help shape research by…

  • sharing the impact of the condition on your life
  • helping us choose the best research to fund
  • using your experiences to inform study design and implementation

“I am excited to be involved in the network as it offers a great opportunity for people living with epilepsy to have a direct impact on the types and quality of research that is carried out.”
Rebecca, Shape Network Member

What impact does Patient and Public Involvement and Engagement (PPIE) have on research?

We know that the key to accelerating further progress in research is the involvement of people affected by epilepsy. There is growing recognition that PPIE in research leads to higher-quality studies and better outcomes.

As Rebecca puts it, her own experience of epilepsy and the side effects of treatments, “gives you the knowledge and coping strategies that can inform and shape research. You’re an expert in your own epilepsy and your voice should be included in shaping research directions and decisions.”

Together, our connected and powerful network will drive and enable crucial research into epilepsy.

ARE YOU A RESEARCHER?

If you’re a researcher and would like to hear more about how the Shape Network’s national PPIE service for scientific and clinical researchers, you can find more information on our website.

Alternatively, please contact our Head of Research & Involvement, Annee, who is happy to help with any queries.

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