Brain scans to investigate autoimmune encephalitis in children and young people Can you help researchers at Kings College London to learn more about autoimmune encephalitis in children and young people Expand Can you or your child help us learn more about autoimmune 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 or antibody-negative autoimmune 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
Exploring Real-World Memory in Autoimmune Encephalitis – Autobiographical Memory Expand PhD Researcher: Sarah Martin (Leeds Beckett University) Supervisor: Dr Kata Pauly-Takacs (Leeds Beckett University) Overview 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. Who is invited to take part? We are inviting you to take part if you are 18-65 years old based UK had a previous diagnosis of Autoimmune Encephalitis and have completed treatment 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: You will be asked to take part in some brief assessments of memory and thinking ability which will last no longer than 1-1.5 hours in total. You will be asked to participate in an interview where you will recall memories from different time periods in your life from past to present. Each time period focuses on memories around specific themes (for example holiday, a work or school-related event). The interview can take up to 2 hours in total, but can be done in two sessions, if you prefer. The interview will be audio-recorded with your permission. 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. 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.
Exploring Real-World Memory in Autoimmune Encephalitis – Self-reported memory experiences Expand PhD Researcher: Sarah Martin (Leeds Beckett University) Supervisor: Dr Kata Pauly-Takacs (Leeds Beckett University) Overview 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 you are 18-65 years old based UK had a previous diagnosis of Autoimmune Encephalitis and have completed treatment. OR 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.
Exploring Real-World Memory in Autoimmune Limbic Encephalitis – Long-term forgetting Expand PhD Researcher: Sarah Martin Supervisor: Dr Kata Pauly-Takacs Overview 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. Who is invited to take part? We are inviting you to take part if you are 18-65 years old had a previous diagnosis of Autoimmune Limbic Encephalitis and have completed treatment. 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: You will be asked to take part in some brief assessments of memory and thinking ability which will last no longer than 1-1.5 hours in total. You will then be asked to take part in a memory task that looks at learning and forgetting information over the course of 1 month. You will be asked to listen to and memorise some very short stories and then answer a series of questions about them at four different time points: Immediately 1 day later 1 week later 1 month later 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, 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. 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]
Study on Hearing and Listening Abilities after Limbic Encephalitis Expand 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]