Are you aged between 16 and 25? Did you contract encephalitis before you were 16?
Trust-Ed is looking into setting up a new school specifically for children who have
suffered acquired brain injury, and would very much appreciate your help with answers
to the following questions. The information you provided will purely be used for
purposes of advising the charity. Please do not make any mark on the questionnaire
that might identify you. If you have further enquiry or would like to be kept informed
of the decision regarding the setting up of a new school, please do not hesitate
to contact us.
Questionnaire
Contact Us
A research study of memory and language impairments in herpes encephalitis
We would like to enquire whether you would take part in a research study that examines
how you understand and use your language and memory abilities. Before you decide
if you want to take part, it is important for you to understand why the research
is being done and what it will involve. Please take time to read the following information
carefully. Ask us if there is anything that is not clear or if you would like more
information. Take time to decide whether or not you wish to take part.
Purpose of this study
The main aim of this study is to examine how language and semantic memory is stored
and processed in the brain. Semantic memory is that part of your memory system which
allows you hold on to and later recall different types of information about the
world around you (for example, the names of different animals or household objects).
By observing the kinds of language and memory difficulties you may have, we hope
to be able to increase our understanding of the way language and memory is organised
in the brain.
What we will ask you to do
We will measure memory and language by using psychological tests like ones you may
have performed in the past. Sometimes the tests will be quite short (about 5 or
10 minutes), and sometimes the tests may be longer (up to an hour). The tests involve
doing some very simple tasks. For example, you may be asked to answer some memory
questions, to read or repeat words, or name pictures. Your performance on these
tasks can help us work out why you find some kinds of material more difficult than
others. We would like to run the tests on a number of occasions, each separated
by 6-8 months. If you have any questions about what the test session involves, we
will be happy to answer them before you agree to take part.
In addition to these tests, we would like you to undergo an MRI scan. MRI stands
for “Magnetic Resonance Imaging”. It involves lying still in a tube-like
enclosure for 20 minutes to half an hour while an image of your brain is produced.
It enables us to understand your performance on the psychological tests in the context
of any physical differences which may exist between your brain and that of other
people. This, in turn, helps us to clarify the way in which language and memory
operate in the brain. The procedure does not involve the administration of any radioactive
substance, but works by applying a magnetic field around your head. MRI scans are
a non-invasive procedure and are considered to be very safe. There will be an opportunity
to learn more about the procedure prior to day of scanning, and you will be able
to raise any concerns with a qualified radiographer or clinician on the day itself.
If you prefer not to have the scan, you may withdraw at any time without having
to give a reason.
What we will not ask you to do
You will not need to change any aspect of your lifestyle if you agree to take part,
and we will not ask you to take any additional medication.
What are the benefits in taking part?
Although there will be little personal benefit in taking part, we hope that what
we find will be of interest and assistance to people with memory or language problems
in general. We still have a lot to learn about how we comprehend and hold on to
information about the world around us and we believe that your participation in
our research will enable us to address these issues.
Confidentiality
Under no circumstances will your name or personal details be passed on to anybody
outside of out research group (the Centre for Speech, Language and the Brain), without
your permission.
What happens to the data we collect from you?
We plan to publish our findings in academic journals and we may also present our
findings at conferences. Wherever our findings are presented, we will never disclose
your name or any other personal details.
Who is organising and funding the research
This research is being carried out by staff in the Centre for Speech, Language and
the Brain at the Department of Experimental Psychology, Cambridge University, under
the supervision of Professor Lorraine Tyler. It is funded by the Medical Research
Council.
Contact details
You may contact Mrs Marie Dixon during office hours on 01223 766458, by fax on 01223
766452 or by email at research@csl.psychol.cam.ac.uk to discuss any aspect of the
study. Please send any written enquiries to Mrs Marie Dixon, Department of Experimental
Psychology, University of Cambridge , Downing Street , Cambridge CB2 3EB .
Thanks in advance for your participation, should you agree to take part.
Professor Lorraine K Tyler
CNS Inflammatory Demyelination
- Surveillance commences in September 2009 for a period of 13 months
- Aims: To determine incidence of the condition; to report clinical features and
distribution; and to monitor short term outcomes
- Funded: Multiple Sclerosis Society and Action Medical Research Charities
- Ethics approval. Black Country Research Ethics Committee (09/H1202/92) and NIGB
Ethics and Confidentiality Committee approvals ( ECC/BPSU 4-03 [FT1] /2009
- Lead investigator: Dr Michael Absoud
- Project supervisors: Dr Evangeline Wassmer and Dr Carole Cummins
- Email:
Michael Absoud
Aetiology of encephalitis in England: a multi-centre prospective study
In most cases both in this country and overseas, the cause of encephalitis is never
found and this makes it impossible to devise new treatments or develop preventative
strategies. The Health Protection Agency (HPA) is now embarking on a study of encephalitis
to improve the number of people who are diagnosed.
The outline protocol for the study was drafted with help from the Encephalitis Society
and the study is being led by Dr. Natasha Crowcroft, Consultant Epidemiologist,
who is a member of the Encephalitis Society Clinical Advisory Panel. The aim is
to improve the ability to diagnose the cause of encephalitis, to discover new causes
and to learn more about how patients are affected by the condition. It also aims
to reduce the current level of 2/3 of patients for whom a cause is never found for
their illness. They will also store patients’ samples for future use when
new diagnostic procedures become available or new causative agents are discovered.”
Natasha said, “Extensive testing, including innovative techniques for new
pathogen discovery will be carried out at the national HPA reference laboratories
and the National Hospital for Neurology and Neurosurgery to complement local routine
tests in ensuring comprehensive investigation.”
Patients will be recruited over a 2 year period from 18 participating hospitals
located in three geographical clusters in the North West and South West of England
and in London. The study has already started in the South West region.
The study’s findings will aid the development of a standard diagnostic algorithm
for the diagnosis of encephalitis.
The study’s findings will aid the development of a standard diagnostic algorithm
for the diagnosis of encephalitis. Detailed assessment of risk factors and outcome
will also be carried out, so that patients and their families and friends can be
given better information about the disease. The HPA is carrying out the study in
partnership with the NHS and with the support and involvement of the Encephalitis
Society and the Clinical Virology Network.
For more information go to
www.hpa.org.uk/
British Paediatric Surveillance Unit
CNS Inflammatory Demyelination Study
Aims: To determine incidence of the condition; to report clinical features and distribution; and to monitor short term outcomes
British Paediatric Surveillance Unit
HON is conducting a study on Internet use for health/medical purposes
From July 1-31, HON is inviting individuals and medical professionals to take part
in its Summer 2010 survey, which focuses on how the Internet is being used for health
and medical purposes. It includes questions on how one typically searches the Internet
for disease information, how one places importance on various health website characteristics,
and how one typically behaves when faced with situations involving the Internet
and health information.
Do you spend several hours a day caring for an adult aged 18-65 years old with encephalitis?
Would you like to influence change in services that allow carers to take a break?
If the answer to both of these questions is "yes" then we would like to hear from
you. We are a team at King's College London and have been commissioned by the Department
of health to find out about carers need for and experience of replacement care services
(also known as respite care). We would like carers to complete a survey to help
us do this. If you are interested further details are available: -
Further Details
Or else please contact David Williams on 020-7848-5418 or email David Williams
or write to (there is no need to use a stamp):
Freepost RRLJ-JXEA-HYAS,
LTNC Care Study,
King’s College London
Palliative Care, Policy, and Rehabilitation,
Weston Education Centre,
Cutcombe Road,
London, SE5 9RJ
Stress, Coping and Parenting Style of Carers of Children Post-Encephalitis
This study was carried out by the School of Psychology of the university of Exeter,
in collaboration with the Encephalitis Society. The study will survey parents of
children who have had vital encephalitis, in order to explore the scope of social,
emotional, and behavioural difficulties experienced by the child, and the coping
strategies employed by the child in order to deal with these difficulties. Our aim
is to explore the experiences of these parents so that we can better predict the
coping strategies and support systems which may help reduce stress and anxiety
for parents.
Parents of post-encephalitis children, who live in the United Kingdom, who wish
to participate in this study should contact the Encephalitis Society
Encephalitis in children two months to three years
Dr KN Ward, Consultant Virologist/Honorary Senior Lecturer, Dept of Virology,
University College London, Windeyer Building, 46 Cleveland St, London WIP 6DB
Email: K N Ward
Key Points
- Between October 1998 and April 2000 178 children have been reported to the BPSU
meeting case definition.
- Most of the confirmed cases presented between 10 and 18 months old.
-
HHV-6 and HHV-7 infections were commonly identified as causes of encephalitis other
causes were herpes simplex and varicella zoster virus infections.
Background
Encephalopathy in early childhood makes a substantial contribution to chronic neurological
disability and the impact ion individual families, frequently exacerbated by diagnostic
uncertainty, may be devastating. The causes, however, are largely unknown.
The National Childhood Encephalopathy Study (NCES), 1976-1979, suggested an unidentified
viral illness as a likely cause (i.e. an encephalitis). Identification of
the causative agent(s) would help to curtail unnecessary investigation, rationalise
treatment and improve reliability of prognosis. Fortunately, more accurate
diagnosis of possible agents causing encephalitis has recently become available
because of new, highly sensitive laboratory methods for detection of nucleic acid
(PCR), antibody and antigen. Two newly discovered viruses, (figure 6 overleaf)
human herpes viruses-6 and -7 (HHV-6 and HHV-7), are obvious candidates for infection
normally occurs within the first three years of life, may be associated with febrile
convulsions, and there have been isolated case reports of encephalitis due to these
viruses.
Objective
To determine the aetiology of encephalitis in children from 2 months old to third
birthday and in particular the role of infection with HHV-6 and HHV-7.
Surveillance Case Definition
Report any child aged 2 months to third birthday with acute or subacute encephalitis.
Include encephalitis of known infectious or post-infectious aetiology
(unless due to pyogenic infection) also include convulsions in a febrile
child:
ii With a total
duration of more than half an hour;
Or
iii Followed by
a coma lasting 2 hours or more;
Or
iiii Followed by paralysis
or other neurological signs not previously present and lasting 24 hours or more.
Exclude
i. Viral (aseptic) meningitis without
encephalopathy;
ii. The following confirmed causes: pyogenic;
infections, hypoxia/ischaemic, vascular, toxic, metabolic, neoplastic;
iii. Uncomplicated fits/convulsions or a series of
convulsions lasting less than half an hour.
If in doubt please discuss with investigators.
Duration
October 1998 to April 2001
You can obtain a full copy of this study from the BPSU website
www.bpsu.inopsu.com
The Tenth Anniversary Encephalitis Society Research Prize of £15,000, was
awarded to Dr Kate Ward in 2005 to pursue this study further. A number of important
new questions arose from the study, in particular how prevalent are enteroviral
causes of encephalitis. In addition Kate wanted to establish a range of microbiological
tests that should be employed routinely throughout the British Isles for diagnosing
serious neurological disease in young children. A report of the work was presented
to the Encephalitis Advisory Panel in January 2008 and can be downloaded.
Report
Brain injury in a parent: new study into the effects on children
Very little is known about how children in the family are affected when a parent
has a brain injury. We are carrying out a study to find out more about how children
cope when this happens. This will help us to develop services which are better able
to support families. We are recruiting families where one parent has had a brain
injury and there is a child aged between 7 and 18 years. We will send some questionnaires
for both parents (including a step parent or cohabitee) and a child to complete.
These will only take a few minutes of your time. All information collected will
be confidential and your responses will be anonymous. To receive further information
or to find out whether your family can take part, please call Amanda Smiton, Clinical
Psychologist in Training on 01865 226431 (Oxford Doctoral Course in Clinical Psychology)
or email amanda.smiton@hmc.ox.ac.uk. Requesting information does not commit you
to taking part in the study. If you do agree to take part, you can withdraw at any
time without giving a reason. A summary of the results will be sent to all families
who take part as soon as the study has ended in July 2005. The study has been approved
by the Oxfordshire Research Ethics Committee and the Encephalitis Society Research
committee.
Neuropsychological impairment profiles and psychosocial outcomes in acute encephalitis
in adults.
– A study of the psychological after-effects of encephalitis
The Purpose of this Study
It has become clear that many people would like to know more about the effects encephalitis
has upon the everyday life of those who have had the disease. Healthcare workers
are in need of a clear picture of the ways in which different types of encephalitis
can impair memory, understanding of words and carrying out of planned behaviour,
amongst other things. Not all of the different causes of encephalitis are well documented
and there are very few studies exploring the differences between them. This study
aims to bring our knowledge up to date and record the ways in which the after effects
can change the experiences and quality of life of both the people with the disease
and their partners and carers. Through this study we can find out how different
kinds of encephalitis affect the brain and cause different psychological problems
and also how the severity of these problems impact upon the person concerned and
their partner, families or carers.
The research is being funded jointly by the Economic and Social Research Council
and the Encephalitis Society. It is being organised by the researchers at the University
of Exeter and the Encephalitis Society.
This research is now complete and is reported in NEUROPSYCHOLOGICAL REHABILITATION 2007, 17 (4/5), 478-505. A copy of this edition can be purchased in the online shop.
Acquired Brain Injury: Impact on Carers
The results of a national study commissioned by the Department of Health to inform
future support for carers
A number of people who replied to our request for help with this research study
asked us to let them know what we found and how the results would be used. As we
believe it will be of interest to everyone who helped us, we are sending this short
summary to you all.
The main report went to the Department of Health earlier this year. It included
an extensive statistical analysis of the questionnaire data and a detailed description
of the problems and experiences you told us about. The report has been well received
by the Policy Research Team and we are told it will be of great interest to policy
makers. On the understanding that the views expressed in our report are not necessarily
those of the Department of Health, we have been given permission to publish the
results. We have already presented some of this work at a national rehabilitation
conference in London.
We have also been awarded additional funding for a follow-up study, which will take
a special look at the difficulties of carers who have young children or other dependent
relatives to look after as well as someone with a long-term neurological problem.
Thank you once again for taking the time and trouble to complete the questionnaires
we sent you and for the additional information many of you gave us by telephone.
Diana Jackson PhD
Senior Research Fellow
E-mail:
diana.m.jackson@kcl.ac.uk
Acquired Brain
Injury: Impact on Carers
Last modified:October 2009