Putting patients at the heart of research How does the Encephalitis Society support research? Throughout Encephalitis Research Month, we will be talking about all things encephalitis research: why is research important, what the Encephalitis Society does to help research, as well as highlighting some of the key research figures and projects. We put patients at the heart of research The Encephalitis Society believes that research should be carried out with patients and members of the public rather than for them. We build bridges between patients and researchers making sure the research benefits both the research community and the public. Consequently, the Society has been actively involved in patient participation involvement activities by: Sitting on a project steering group Developing or providing feedback on research material Becoming a co-applicant Becoming a co-researcher At the time of writing this report we are involved in eight national or global research projects, three guidelines working groups and numerous research articles. And, since 2019, we have helped recruit participants for over 26 projects. Dr Rubina Shah, of Cardiff University, said: I am grateful to the Encephalitis Society UK for providing support with participant recruitment for my study. Without your support, I would not have succeeded. I am thankful to all family members who participated in my study. I have been able to create score band descriptors for the FROM-16 questionnaire. This means that doctors and nurses will be able to understand the questionnaire scores and so have a much better idea of how much a family member is being affected by having someone in the family with a health condition, such as encephalitis. The research has also created a new way of using the data to understand better the economic impact of this effect on family members. A big thank you from the research team at Cardiff University! June is Encephalitis Research Month. And to celebrate, The Big Give is offering to DOUBLE every donation we receive this month - so for every £1 that is donated, we will receive another £1 on top. Any money raised will go towards our Encephalitis Research Month appeal and projects which support researchers around the world. If you would like to double your donation to the Encephalitis Society, visit the Big Give website. Double your Donation Manage Cookie Preferences