The Encephalitis Society's research budget derives from donations and fundraising and is held in a restricted fund - the Natalie Taylor Research fund. Any money for the fund should be submitted with a covering note stating that the money is for research.

As the Encephalitis Society gains a higher national and international profile it is attracting more requests from researchers to support research. The Society has developed a robust research strategy to ensure that the projects chosen match the aims. All recipients of funding are asked to give yearly, or in some cases twice yearly, reports to the Board of Trustees on their progress. The Annual Review and the Annual General Meeting is used to propagate the successes and progress of funded projects.

Priorities for Research into Encephalitis

Encephalitis is a group of diseases about which little is known. It is an inflammation of the brain that comes on suddenly and produces serious neurological disease. It can have a variety of causes of which virus infection is the most frequent and important.

Even with currently available treatment, acyclovir, for one type of encephalitis, Herpes Simplex Encephalitis - due to the cold sore virus – the mortality rate from this and other types of virus encephalitis is very high; and even survivors can be left with devastating disability that can profoundly affect both their own lives and those of their loved ones.

In at least half of the cases of encephalitis, we do not know the cause (around 30% of cases are Herpes Simplex Encephalitis); and accurate information on both the causes and the true incidence of encephalitis in the UK is not available and is urgently needed.

We need research to address the following questions relating to encephalitis.

1. What is the precise incidence and distribution of encephalitis?
2. What is the precise burden of mortality and morbidity attributable to encephalitis?
3. Which are the most frequent viruses and other organisms that cause encephalitis?
4. Once we understand which organisms cause encephalitis, we need to know why encephalitis occurs only in certain individuals, when many of the viruses involved can be detected in so many normal unaffected people. Is this due mainly to something in the virus, in the make-up of the affected individuals, or in both?
5. How can we improve the recognition, diagnosis and treatment of those affected by encephalitis; and can we predict outcome?
6. Can we develop more specific and effective therapies to combat viral encephalitis than are currently available?
7. What is the best standard of care for patients affected by encephalitis?
8. How can we improve outcome from encephalitis in terms of both mortality and morbidity?
9. How can we improve the rehabilitation of patients who have been affected by encephalitis?
10. Can we prevent this devastating disease? e.g. with prior immunisation with vaccines.

Paper prepared by Dr Nicholas Davies, Clinical Research Fellow at Guy’s and St Thomas’s Hospital, London, and Trustee of the Encephalitis Society; in consultation with Professor Peter G E Kennedy, Burton Professor of Neurology at Glasgow University and Dr Tom Solomon, Lecturer in Neurology at the University of Liverpool. All are members of the Society’s expert Clinical Advisory Panel. October 2003