Patient and Public Involvement and Engagement

Epilepsy research registry 

Please join our Epilepsy Registry if:

• You have a direct experience of and / or an interest in epilepsy and you would like to get involved in research as a Patient and Public Involvement and Engagement (PPIE) partner. This is not the same as taking part in research as a participant. Instead, it is a chance to get involved in the design, management, running, analysis and dissemination of research. We will put you in touch with Principal Investigators / their study teams who are looking for PPIE partners to collaborate with. 

We will reimburse you for your time and any reasonable expenses (e.g. food, travel) incurred as a result of your involvement. We will also acknowledge you in any published papers arising from the research.

• You have undergone investigations, intracranial recordings, vagal nerve stimulation (VNS) or epilepsy surgery and would like to register your interest in talking to others in a similar situation, for example, those who are considering undergoing epilepsy surgery. This is also your way of letting us know if you would like to share your own story of surgery (intracranial recordings, LITT, epilepsy surgery, EASEE) at a future Brain Buddy UK event.

If you are interested in finding out more about becoming a PPIE partner and / or joining a registry of those interested in talking to other patients, please contact uclh.epilepsyregistry@nhs.net and we will email you a brief form to complete.