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
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]).
LEGIONE Study Expand Aims: LEGIONE is a 34-week study that is evaluating whether an investigational medication called rozanolixizumab is well tolerated and effective in treating LGI1 autoimmune encephalitis. This drug is also being studied in other conditions that involve the immune system. Institution: This study is sponsored by UCB, a global biopharma company focusing on immunology and neurology disorders, including autoimmune diseases. Location: LEGIONE will be taking place at sites in several different countries all around the world (Australia, Belgium, Canada, France, Germany, Italy, Korea, Netherlands, Portugal, Spain, Turkey, United Kingdom, USA). You can use this link below to search for the site closest to you and see their contact information. https://aielegione.com/locations What key criteria should participants meet Be between 18 and 89 years old Have tested positive for anti-LGI1 antibody Have symptoms that started within the last 12 months and include facio-brachial dystonic seizures (FBDS) and/or other partial (focal) seizures, unless they stopped as a result of current intravenous methylprednisolone (IVMP) treatment Be considered suitable for treatment with IVMP or have started treatment with IVMP What will taking part involve for the participants? The study will take place over 34 weeks and includes screening ( finding out if you are suitable for the study), study treatment period and safety follow-up period (monitoring). Clinical studies are completely voluntary, and participants can leave at any time without losing any benefits they would normally be entitled to. Will participant expenses be reimbursed? You will be reimbursed for reasonable travel expenses as appropriate. If you are interested in taking part, or you think someone you care about may be suitable for the study, talk to your doctor. They may be able to discuss the study with you and talk you through the potential benefits and risks of being involved before you make your decision about participating. Alternatively, please check contact details for the closest site and get in touch https://aielegione.com/locations For more information about the study https://aielegione.com/
CIELO study Expand Aims: The purpose of this study is to assess the effectiveness and safety of satralizumab in participants with anti-NMDAR and anti-LGI1 encephalitis. Institution: This study is sponsored by Hoffmann-La Roche, one of the world’s largest biotech companies Location: This trial runs in 11 countries: Argentina, Austria, China, Czechia, Denmark, Italy, Japan, Poland, South Korea, Taiwan and United States What key criteria should participants meet Be at least 12 years old and have been diagnosed with anti-NMDAR OR at least 18 years old and be diagnosed with anti-LGI1 Symptoms started no longer than nine months ago. Who cannot take part · People may not be able to take part in this trial if they have a history of cancer or certain other medical conditions, or if they have been treated with particular medications. · People who are pregnant or breastfeeding will not be able to take part in this clinical trial. What will taking part involve for the participants? Everyone who joins this clinical trial will be put into one of two groups randomly and given either satralizumab or placebo (substance with no active ingredients) as a subcutaneous injection at weeks 0, 2 and 4, and then every four weeks until week 52. Participants will have a 50% chance of being placed in either the satralizumab or placebo group. Comparing results from the different groups helps the researchers know whether any changes seen are a result of the drug or occurring by chance. Participants will be seen by the clinical trial doctor every four weeks to be given their clinical trial treatment. These hospital visits will include checks to see how the participant is responding to the treatment and any side effects they may be having. How long will the trial last? Depending on whether participants choose to take part in an optional extension period of the trial (which will last for at least two years), their total time in the clinical trial may last for up to five years (including follow-up appointments). Participants are free to stop trial treatment and leave the clinical trial at any time. Will participant expenses be reimbursed? You may be reimbursed for any reasonable travel expenses How do I take part? If you are interested in taking part, or you think someone you care about may be suitable for the study, talk to your doctor. They may be able to discuss the study with you and talk you through the potential benefits and risks of being involved before you make your decision about participating. For more information about the study or if you would like to contact a center in your country https://forpatients.roche.com/en/trials/autoimmune-disorder/autoimmune-encephalitis/a-study-to-evaluate-the-efficacy--safety--pharmacokinet-99237.html
Predictors and psychological outcomes associated with perceived boundary ambiguity in families affected by acute, non-progressive neurological conditions Expand Lead Researcher: Mariann Kovacs Institution: University of Oxford If you are the partner or spouse of someone who has had a brain injury (such as encephalitis), please consider participating in an ongoing research project that explores how your well-being and relationship satisfaction have been affected since your partner’s brain injury, The results will shape future clinical practice and service provision for families affected by a brain injury/stroke. WHAT IT INVOLVES: two online surveys, completed 3 months apart For more information, follow http://tinyurl.com/lifepostinjury