Brain scans to investigate NMDA receptor antibody encephalitis in children and young people Can you help researchers at Kings College London to learn more about NMDA receptor antibody encephalitis in children and young people Expand Can you or your child help us learn more about NMDA receptor antibody encephalitis? Are you aged between eight and 24-years-old? Would you like to earn up to £80 in gift vouchers? Then you may be able to help researchers at Kings College London develop advanced brain MRI scans so they can better investigate autoimmune encephalitis in children and young people. The research team are recruiting two groups: Youngsters who have been diagnosed with Anti-NMDAR encephalitis in the past 12 months, or had a relapse (new attack) of anti-NMDAR encephalitis in the past 12 months Healthy youngsters without an encephalitis diagnosis (to act as control group) Travel expenses will be reimbursed – with the tokens offered as a thank you for taking part. The MRI scans will take place at St. Thomas’ Hospital, London. Dr Michael Eyre, of Kings College London, said MRI is a safe imaging technology with participants able to listen to music or watch Netflix during the scan. “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,” he said. “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,” To find out more and take part, email Dr Eyre at [email protected] Email Dr Michael Eyre
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]
A World Cafe as an approach to an exploratory study of the employment of people with a range of health conditions that affect cognition Expand Swansea University 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. Participants conditions: 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) Expand 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. Are you aged between 18 and 89? Do you have a confirmed diagnosis of LGI1 AIE? Did you experience your first ever LGI1 AIE symptoms within the past 2 years/24 months? 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]
Episodic memory loss following LGI1-limbic encephalitis Expand 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)? Patients who have tested positive for LGI1 antibodies only Adults aged between 18-70 years of age. Free of clinical symptoms and be considered clinically stable by their responsible consultant neurologist. This is usually about one year from the onset of their acute illness. Not on any medication to treat their condition such as prednisolone or psychoactive medication. Ideally, patients will be no longer be taking epilepsy-controlling medication. Patients should be seizure-free. Patients should report some degree of episodic memory difficulties in their day-to-day life. Patients should self-report as healthy and free of secondary gain or active psychopathology. All participants should be fluent in English. 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]).
Neuropsychological outcomes following autoimmune encephalitis (AIE) Expand Lead Researcher: Dr Orla Strahan Institution: University College Dublin Researchers in University College Dublin and its affiliated teaching hospital (St Vincent’s University Hospital Dublin) are investigating the impact of autoimmune encephalitis on cognition (thinking and memory) and psychological well-being. What’s involved? You will be invited to undergo some pen and paper tests to assess your cognition (thinking and memory). This will take about 2 hours and will be done virtually via Zoom. We would also like to hear about the impact your diagnosis has had on you, in your own words. Who can take part? Individuals living in Ireland and the U.K., over the age of 18, and who have a diagnosis of autoimmune encephalitis. Common examples or terms of autoimmune encephalitis (AIE) include: Limbic Encephalitis, Anti-NMDAR Encephalitis, LGI1-Antibody Encephalitis, CASPR2-Antibody Encephalitis, Anti-GABA Receptor Encephalitis, Anti-DPPX Encephalitis, Anti-AMPAR Encephalitis. Where can I get more Information? If you are interested in taking part, or would like more information, please contact Dr. Orla Strahan at [email protected]
Experiences of social identity and group processes for children and young people with neurological and neurodevelopmental conditions Expand Lead researcher: Shona Leeworthy Institution: University of Exeter Children & young people aged 8-25 years who have a brain injury/condition, epilepsy, ADHD or autism are invited to take part in an online interview, talking about their experiences of attending social activity groups. Please see the links below for more information ‘Hello! My name is Shona. I am a researcher from the University of Exeter, and I am looking for children or young people who have brain injury, epilepsy, autism, or ADHD to take part in an online interview to help me understand their experience of attending activity groups. You will receive a £10 voucher to say thank you. Please or use the links below Age 8-15 years (for parents and children to complete together): https://forms.office.com/Pages/ResponsePage.aspx?id=d10qkZj77k6vMhM02PBKU1uJWQD14QpFvXuoct2RuA9UQUlPUDRDMkcwUURHQlNRNDRTM04xVVdZWS4u Age 16-25 years (for young people to complete – with or without parent). https://forms.office.com/Pages/ResponsePage.aspx?id=d10qkZj77k6vMhM02PBKU1uJWQD14QpFvXuoct2RuA9UOVhaU0tIUTdROVlUUVhYVjVPSEg1N1lNNS4u