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Research Currently Recruiting

Below you will find information about Research projects that need participants from our Encephalitis communities

Help us advertise research in UK Hospitals

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. 

Hospital Poster

Flyer for Medical Appointments

Find out more at

ENCEPH–UK: Understanding & Improving the Outcome of Encephalitis

Background to the study

Encephalitis (inflammation of the brain) has a lot of causes and is often very difficult to diagnose and manage because it presents in many different ways. ENCEPH-UK is a large study across the UK looking into the early features of Encephalitis and its outcomes. The Neuropsychology part of the study aims to find the different types of neuropsychological problems (e.g. in memory, language or problem-solving) caused by different types of Encephalitis. We hope to increase understanding of the neuropsychological impact of Encephalitis, in order to improve management of Encephalitis and inform rehabilitation for people with Encephalitis.

What will happen if I agree to take part? 

A researcher will contact you to give you some more information about the study and answer any questions you may have. If you are happy to participate, you will be sent an information pack for the main ENCEPH UK study. This will be posted to you and should take no more than 15 minutes in total to complete. You will be provided with a pre-paid envelope to send them back. If you are willing to participate, the researcher will contact you to book an appointment. At this appointment, the researcher will go through the information sheet for this part of the study with you, give you the opportunity to ask questions, and invite you to consent to the aspects of the study that you are happy with.  Depending on where you live, the assessments will either be conducted at The Walton Centre Foundation Trust in Liverpool or St Thomas’s Hospital, Institute of Psychiatry, Kings College in London. We will reimburse your travel expenses. Alternatively, we can arrange a home visit if that is more suitable. There are two sessions, lasting between 2 and 2.5 hours each. The assessments are paper and pen game-style tasks.

What will happen to the information collected?

The information that you provide will remain confidential. The procedures for handling, processing, storing and destroying the data will comply with International Data Protection Standards, such as the UK Data Protection Act of 1998.

What this means is that only people directly involved in the study will be able to look at the information collected about you.

Your consent form and contact details will be kept away from any data by members of the study team.

All other study related information will have your name and address removed so that you cannot be recognised and kept strictly confidential and secure. Family members cannot access your data without you giving them consent to do so.

What are the disadvantages or benefits of taking part?

The assessments are not harmful or distressing, but some people can find them challenging or fatiguing. The researchers are sensitive to this, and frequent breaks will be provided where necessary.

There are no direct benefits to you, but learning more about encephalitis will allow for a better understanding of Encephalitis and will help patients in the future.

Who has approved the study?

All research in the NHS is looked at by an independent group of people called a Research Ethics Committee, to protect your rights. This study has been reviewed and given favourable opinion by NRES Committee East Midlands – Nottingham.

If you feel that you do not understand or have any questions about this leaflet, please contact the study team using the details provided below. Similarly, if you are a carer and if you feel that the patient is unable to fully understand this leaflet or if you have any questions then please contact the study team.

Who is the research looking to recruit?

We are looking to recruit any person who has been given a diagnosis consistent with Encephalitis.

What do I do if I would like to take part?

If you would like to participate, please contact a member of the study team.

Contact: Hayley Jelleyman

Tel: 0151 795 9672


Address: Institute of Infection and Global Health, University of Liverpool, Ronald Ross Building, 8 West Derby Street, Liverpool L69 7BE

Memory Changes after Encephalitis - Volunteers Needed


Participants with Prosopagnosia Needed for Research


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 (

Dr Fiona Ashworth (

Telephone: 0845 196 2346/5105

Understanding How Brain Injury Affects Development

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, 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:

Patterns of Preserved and Impaired Memory in People with Amnesia

What is this study about? 

The aim of this new study is to understand brain functioning in people with memory problems, with the hope that we can use this to help future diagnosis of amnesia.  The study will involve administering a number of cognitive tasks to patients with memory difficulties, usually resulting from a neurological illness such as limbic encephalitis or selected cases of herpes simplex encephalitis.

Who is the research looking to recruit?

The study team are looking to recruit people with significant memory problems or amnesia following a neurological illness, aged 18-75 years, fluent in English with no other neurological disorders, developmental learning difficulties or major mental health difficulties.

What is involved?

Suitable participants would initially be seen for a screening visit, which could take place at their home or at Addenbrooke’s Hospital in Cambridge, as participants prefer.  The initial screening session would involve a number of standard cognitive tests, lasting around 1-2 hours.  If participants were willing to take part, up to three other sessions could be arranged, one of which would take place in Cambridge, during which they would also be invited to undergo an MRI scan to obtain a high-definition image of brain structure.  Testing sessions would involve administration of computerised tasks assessing different aspects of memory and cognition.

Travel and accommodation expenses for patients and carers will be paid for taking part in the study, which has been approved by the National Research Ethics Service.

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 either Mariella Gregori, Email: or Dr Georgina Browne, Email, or Dr Emma Woodberry, Email:, Tel: 01223 348133 / 217557, at Addenbrooke’s Hospital in Cambridge.

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.