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Below you will find information about Research projects that need participants from our Encephalitis communities
In the UK there is a study that will tell us if a new treatment will help people with Herpes Simplex Virus (HSV) encephalitis.
Encephalitis means swelling of the brain. It can be very severe, often leaving those affected with a brain injury, and in some cases it can be life-threatening. So it has a devastating impact on patients and their loved ones. However, research in encephalitis is often not done.
HSV encephalitis is the most commonly identified type of Encephalitis in the UK. Doctors have been wondering for many years if a commonly used drug that reduces swelling called Dexymethasone will help patients with HSV Encephalitis.
We need 100 hospitals to sign up to this study. Can you help us?
Download the below posters to help us recruit more hospitals to the trial - one can be put up in noticeboards at hospitals the other you can take to your next hospital appointment.
Find out more at www.dexenceph.org.uk
What is this study about?
The aim of this study is to shed further light on self-recognition, by investigating potential temporal recovery solutions to impaired self-face recognition in prosopagnosia. The study will involve administering a self-recognition task to individuals with prosopagnosia.
Who is conducting the study?
The study team is formed of three researchers in the Department of Psychology at Anglia Ruskin University, Cambridge - Dr Flavia Cardini, Dr Peter Hills and Dr Fiona Ashworth.
Who are we looking to recruit?
We are looking to recruit people with prosopagnosia following an acquired brain injury, aged 18-75 years.
What is involved?
Suitable participants would be required to attend one day of computer based tasks (with multiple breaks where needed) which could take place either in Cambridge, London or the participant’s home. Participants will be invited to perform a number of computer based tasks including a self-recognition task where they will look at different pictures of either their own face or someone else’s and will be asked to decide whether the face is their own or the other’s. The overall experiment will take around 3 hours and will be divided in four sections across the day.
What do I do if I would like to take part?
If you are interested in taking part, or you would like further details, contact:
Dr Flavia Cardini (Flavia.firstname.lastname@example.org)
Dr Fiona Ashworth (email@example.com)
Telephone: 0845 196 2346/5105
Researcher: Beverley Garrigan (University of East Anglia).
Research Supervisors: Dr Peter Langdon (University of Kent) and Dr Anna Adlam (University of Exeter).
What is the study about?
The purpose of this study is to look at how young people with a brain injury develop compared to people of the same age who do not have a brain injury. We want to know more about how brain injuries affect the way people think and act. Damage to the brain can affect various aspects of peoples’ lives and the more we know about this, the better we will be able to help young people who have a brain injury. This study is part of a PhD project.
What will the study involve?
The study will involve two sessions, which can either take place at your home or at the University of East Anglia (Norwich), whichever is most convenient for you. The first session will last between 90 minutes and two hours. The second session will be two weeks later and this will only last about 30-45 minutes.
During these sessions you will be asked to answer some questions. Some questions are about how you make decisions and others are about your behaviour. Some questions will be pen and paper measures and others will be presented on a laptop computer. One of your parents or someone who looks after you will also be asked to fill in a short questionnaire about you, which they can post back to the researcher. You will be paid £5 for your time.
Who can take part?
We are looking to recruit young people, aged 11-21 who have survived a brain injury, are at least 6 months post injury and have not been diagnosed with any developmental disorder (e.g. autism). We are recruiting from both the East Anglia and South Yorkshire regions.
How do I find out more?
If you are aged 16 or over and interested in taking part in the study, or you are interested in your child taking part, you can contact the researcher directly by emailing firstname.lastname@example.org, or phoning 07910231258 (if there is no answer, please leave a message with your name and number and the researcher will call you back). For more information about this research, see: https://www.uea.ac.uk/medicine/neuropsychology/research
We need YOUR help with some research!
Working with our colleagues, The University of Oxford would like to interview people who meet the following criteria.
Colleagues at Oxford have been working with survivors of some types of autoimmune encephalitis and now we need to speak with people who’s encephalitis was not caused by their immune system, but by infection. This can help us work out whether some of the problems they have after encephalitis are specific to their type of encephalitis or whether they are the same in all types of encephalitis.
The main aims of the research will be to understand some cognitive, social and psychological outcomes in people.
So if you have had an infectious type of encephalitis and you were over the age of 40 when you became ill, please email email@example.com and tell us:
• What type of encephalitis you had.
• The age you were ill.
• The age you are now.
• Your gender (male/female).
• Your contact email and telephone number.
Exploring Resilience in families affected by parental brain injury
Have you, your spouse or partner had a brain injury (including traumatic brain injury, stroke, subarachnoid haemorrhage, ruptured AVM or cavernoma or encephalitis)?
Do you have children between the ages of 8-18?
If so, you might be able to take part in a family research study with the University of Brighton.
The study explores how families support children’s resilience when one of their parents has suffered a brain injury due to an accident or a stroke.
We know it can be very difficult for the whole family when a parent of school-age children has a brain injury or stroke. We also know that because of this, some children struggle with their mental health and well-being. Not much is known about what type of professional support can help; nor are there many services in the UK catering to the needs of families in this situation.
Despite the many challenges posed by a parental brain injury, some families find ways to cope and help children develop to their best potential: that is to be resilient or bounce back from hard times. We want to find out what children think helps them to be resilient.
The research would involve the whole family. We would ask the parents a little about the challenges their family faces due to the brain injury. However, we won’t ask the children lots of questions about what upsets them or what they find difficult.
The focus of the research is on the positive things you and your children are already doing to deal with these challenges. We will ask children to sort some cards with statements describing things that have been shown to develop resilience in children facing other challenges.
It is hoped that this research will inform improvements in the support that is offered to families after brain injury, including stroke. The research has been approved and is sponsored by the University of Brighton.
The researcher, John Ling, is a specialist nurse who works with people affected by brain injuries. If you would like to know more please contact John at firstname.lastname@example.org or 07903 521757
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.