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Get involved in one of the following research projects!
If you are interested in taking part in research, please have a look at the following research projects on encephalitis and its consequences. If you have further question about any of these projects, please contact the lead-person advertised in the project summary.
Disclaimer: The Encephalitis Society is encouraging, supporting and funding scientific research into the condition, from diagnosis, treatment through to recovery and rehabilitation. By helping to find participants for research studies, Encephalitis Society is not taking any responsibility for the research and is therefore not liable for any claims concerning negligence, harm or oversight that might arise during the course of the research.
PhD Researcher: Sarah Martin (Leeds Beckett University)
Supervisor: Dr Kata Pauly-Takacs (Leeds Beckett University)
This study looks at how people who have been treated for Autoimmune Encephalitis perceive or experience their own memory in everyday situations. We are aware that changes in the brain after encephalitis may result in ongoing problems with memory for some people. However, the types of difficulties that people have are under researched. When assessed in the clinic these memory difficulties may seem mild, but it is evident that they have significant impacts on day-to-day functioning. Therefore, the purpose of this study is to gain a better understanding of patients’ real-world memory problems, with which we hope to inform their care and support needs.
Who is invited to take part?
We are inviting you to take part if
We are also looking for healthy participants (18-65 years based in the UK) without an Autoimmune Encephalitis diagnosis for the purpose of comparison
What do you have to do?
Before you take part in the study, we will ask you to confirm a few details related to your diagnosis, if you can (if you had a diagnosis of Autoimmune Encephalitis). You will then be asked to complete a memory questionnaire online which will take 15-20 minutes of your time. It will ask you to rate your experience in relation to how you use your memory and how satisfied you are with your memory in everyday situations. For example, the questionnaire asks you to rate the extent to which you agree with the following statements:
‘I am generally pleased with my memory ability’
‘I worry that I will forget something important’
This study will take place online. We will send you a link to the questionnaire via email if you wish to take part.
Interested in taking part?
If you are interested in taking part or would like more information on the study please contact the PhD Researcher, Sarah Martin at [email protected] or on 0113 812 5456.
This study looks at how people who were treated for Autoimmune Encephalitis remember past personal memories (also known as autobiographical memory). We are aware that changes in the brain after encephalitis may result in ongoing problems with memory for some people. However, the types of difficulties that people have are under researched. When assessed in the clinic these memory difficulties may seem mild, but it is evident that they have significant impacts on day-to-day functioning. Therefore, the purpose of this study is to gain a better understanding of patients’ real-world memory problems, with which we hope to inform their care and support needs.
What do you have to do?
Before you take part in the study, we will ask you to confirm a few details related to your diagnosis, if you can.
There will be two parts to this study:
This study will take place remotely, so you need to be comfortable with the use of:
- a computer/tablet device
- video-conferencing software (Skype, Teams or Zoom),
or have someone to assist you with such technology.
Alternatively, we may be able to arrange for face-to-face sessions if you are local to the Leeds area, if covid guidelines allow and if that is your preference.
You will receive a £20 ‘love to shop’ voucher as a token of appreciation for giving up your time.
PhD Researcher: Sarah Martin
Supervisor: Dr Kata Pauly-Takacs
This study looks at how people who were treated for autoimmune limbic encephalitis remember and forget verbal information over time. We are aware that changes in the brain after encephalitis may result in ongoing problems with memory for some people. However, the types of difficulties that people have are under researched. When assessed in the clinic these memory difficulties may seem mild, but it is evident that they have significant impacts on day-to-day functioning. Therefore, the purpose of this study is to gain a better understanding of patients’ real- world memory problems, with which we hope to inform their care and support needs.
Before you take part in the study we will ask you to confirm a few details related to your diagnosis, if you can.
Alternatively, sessions may take place face to face at Leeds Beckett University if covid guidelines allow and if that is your preference.
You will receive a £20 ‘love to shop’ voucher as token of appreciation for giving up your time.
If you are interested in taking part or would like more information on the study please contact the PhD Researcher, Sarah Martin at [email protected]
Can you help researchers at Kings College London to learn more about NMDA receptor antibody encephalitis in children and young people
Can you or your child help us learn more about NMDA receptor antibody encephalitis?
Dr Michael Eyre and colleagues at King’s College London are developing advanced brain MRI scans to investigate autoimmune encephalitis in children and young people.
“We will assess if these scans, combined with tests of memory, thinking, mental health and functioning in daily life, can help predict the outcome of autoimmune encephalitis for the individual person,” said Dr Eyre, who is a Clinical Research Fellow.
The research team are looking for people aged 8-24 years with recent onset (in the last one year) of NMDA receptor antibody encephalitis. They are also looking for healthy volunteers in the same age range without a diagnosis of encephalitis, to act as a control group.
Games on an iPad are used to test thinking skills
MRI scans will take place at St. Thomas’ Hospital, London.
MRI is a safe imaging technology which has no known health risks. Participants can listen to music or watch Netflix during the scan. Travel expenses are reimbursed and tokens worth up to £80 are offered to say thanks for taking part.
“We hope our results will ultimately help doctors select the best treatment for each patient, improving the chances of controlling their symptoms sooner, shortening hospital stays and reducing the long-term effects on their lives,” says Dr Eyre.
If you or someone you care for might be interested, please contact Dr Eyre.
Email Dr Michael Eyre
Dr Meher Lad, Newcastle University
Hearing and listening abilities are related to memory function and this can potentially allow us to monitor memoryfunction better. We are interested in developing tests that allow this.
This study is conducted online via Zoom and a pair of headphones.
We would like to invite
1. people who have had autoimmune limbic encephalitis more than 6 months ago and
2.people who have not had limbic encephalitis but are interested in participating so that we can compare theirperformance to people who have had limbic encephalitis.
We have designed online computer games to examine how memory abilities are related to hearing and listeningabilities. A participant will complete these after a short interview about their encephalitis episode. We will alsoconduct a brief test of memory and thinking and a questionnaire about musical experience.
If a participant lives near Newcastle, they will also have the opportunity to take part in an MRI scan of the head. This part is entirely optional.
Participation costs (per session) and reasonable contributions towards travel are provided.
If interested or for queries please email: [email protected]
Lead Researcher: Harry Bevan
This study is to look into how a condition, that affects the brain, can affect gaining and maintaining a job. The way this will be done is by using a new technique for getting peoples opinions and thoughts and ideas down on paper. That technique is called a world café. A world café is where groups of people sit around a table (with food, drink and music provided) and then have a person elected as a conversation leader. After a short talk with the main researcher and the conversation leaders, several questions are asked to the groups. During the time given, the groups then engage in conversation about the questions, writing down their ideas and thoughts on the paper tablecloth provided with some pens. The idea is to gain as many ideas and opinions as possible to use them in a future study as points of inspiration for devices to help people get and keep a job.
The individual should be above 18 years of age.
The individual should have a condition that affects cognition.
The individual should have attempted to gain or has gained employment.
The individuals should be based within the UK.
How to get in touch for more information and participation?
If you would like more information on the "World Cafe" event, the research, or anything that you feel requires more clarification, please email Harry at [email protected].”
Help us better understand Leucine-rich Glioma Inactivated Autoimmune Encephalitis (LGI1 AIE).
A research study is looking for individuals with Leucine-rich Glioma Inactivated Autoimmune Encephalitis (LGI1 AIE) to take part in a 60-minute telephone interview about their experience of LGI1 AIE.
This study is open to anyone across the world.
All participants will receive $50 for their time and participation.
The study has received ethics approval from WCG IRB. All information will remain confidential.
Please note that, if you are interested in taking part, some brief information will be collected about you to confirm that you are eligible to take part in the study. If you are deemed not eligible to take part, your information will not be used and will be destroyed.
If you are interested, please contact Charlotte Cox for more information and to see if you qualify to take part.
E-mail: [email protected]
Institution: University of Oxford
Lead researcher: Lawson Falshaw, Trainee Clinical Psychologist
Researchers at the University of Oxford are exploring how acquired brain injury impacts couples’ relationships. They are looking for people who are in a relationship with someone who has experienced an acquired brain injury (including encephalitis) and can spare 10-15 minutes to complete a short online survey. It is hoped this study will improve the support provided to couples after brain injury.
Here is the link to the online survey:
Thank you and please share this with anyone who you feel may be interested in taking part.
For more information please contact Lawson at [email protected]
Institution: UCL/National Hospital for Neurology and Neurosurgery, London
Lead researcher: Dr Thomas Miller [email protected]
Neurologists at UCL/National Hospital for Neurology and Neurosurgery – based in Central London – are recruiting patients that have recovered from LGI1-limbic encephalitis and have memory difficulties to take part in a study.
The study is a functional MRI study that is trying to visualise how memory processes become affected after the disease.
This involves some neuropsychology testing and retrieval of memories from your life, some of which you will then be asked to recall during MRI scanning.
What key criteria should participants meet (e.g. age, type of encephalitis, geographical location)?
What will taking part involve for the participants? (schedule of activity i.e. if home visits possible, length of visits, medication changes)
Initially, some memory testing performed at home alongside retrieval of patients own memories. These can be done on the same visit or on two separate visits (depending on patient preference). These take about 1.5 hours each. Then there is the visit to our Centre for the scan which takes about 2.5 hours from walking in to leaving again (and including breaks).
Are you looking for a control group? If so, what is the criteria?
Yes - healthy control participants will be matched on the basis of age, gender, educational level, and on general neuropsychological measures.
Will participant expenses be reimbursed?
Yes, we cover their time and if need be travel and accommodation.
For more information please contact Dr Tom Miller ([email protected]).