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.
Details of research studies supported by the Society are displayed under Research Studies.
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.
- What is the precise incidence and distribution of encephalitis?
- What is the precise burden of mortality and morbidity attributable to encephalitis?
- Which are the most frequent viruses and other organisms that cause encephalitis?
- 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?
- How can we improve the recognition, diagnosis and treatment of those affected by
encephalitis; and can we predict outcome?
- Can we develop more specific and effective therapies to combat viral encephalitis
than are currently available?
- What is the best standard of care for patients affected by encephalitis?
- How can we improve outcome from encephalitis in terms of both mortality and morbidity?
- How can we improve the rehabilitation of patients who have been affected by encephalitis?
- 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