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Shape Network PPIE Group

Research needs people affected by epilepsy, which is why the Epilepsy Research Institute built the Shape Network - the UK’s largest network of research-interested people affected by epilepsy.

The Shape Network is our PPIE group, made up of over 300 people living with epilepsy, their families and carers. Members of the Shape Network work in partnership with researchers to plan, design, manage, evaluate and disseminate research.

For people affected by epilepsy

We regularly share opportunities for involvement in all aspects of research for people with epilepsy, their families and carers.

Through the Shape Network you can:

  • LEARN about the science of epilepsy
  • PARTICIPATE in research studies
  • SHAPE research priorities and how studies are carried out

Your involvement will help build relationships, increase investment in epilepsy research, accelerate the development of new treatments and ensure we prioritise the research that matters most to you.

For researchers 

Members of the Shape Network can participate in studies as well as play an active role in the design and delivery of research through patient and public involvement and engagement (PPIE) activities.

Through the network, researchers can:

  • Share study results and updates
  • Recruit participants
  • Carry out PPIE activities to prioritise research questions, design meaningful and relevant studies, improve participant experience and share results effectively

The Shape Network can also provide hands-on support and facilitation for PPIE, engagement, communications and dissemination activities and partner on funding applications.

If you’d like to discuss this further, please email our Head of Research & Involvement, Annee Amjad, or visit the Patient and Public Involvement page on The Hub – the online discussion forum of the Epilepsy Research Institute for more information.