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 meyre@nhs.net

Email Dr Michael Eyre

Institution: UCL/National Hospital for Neurology and Neurosurgery, London

Lead researcher: Dr Thomas Miller t.d.miller@ucl.ac.uk

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 (t.d.miller@ucl.ac.uk).

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

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

Institution: King's College London, UK

Lead Researcher: Rutendo Kusosa

Have you experienced an injury to your brain, such as a Stroke or Traumatic Brain Injury?

Have you been struggling with feeling low since?

PARTICIPANTS NEEDED!

§ Do you have a diagnosis of Encephalitis?

§ Have you been experiencing depression after the diagnosis?

§ Do you have access to an iOS or Android compatible smartphone?

§ Are you 18 and over?

§ Are you able to speak and understand English?

If so, you may be eligible to take part in this study.

We know that after having a brain injury, people can struggle with feeling low in mood. This can be because of difficult changes and adjustments in everyday life that follow an acquired brain injury.

Therapies like cognitive behavioural therapy (CBT) has been found to be helpful for reducing depression. However sometimes such therapies can be difficult to access. There is growing interest in how this intervention can be made more readily available through technology, for example using mobile phone applications.

Our study aims to see how feasible and acceptable a blended psychological intervention, using a novel mobile phone app is in helping people who are experiencing depression after acquired brain injury. We are also interested in individuals experience of the intervention, for examples what makes it easier or harder to use the mobile phone app.

Taking part in study will involve you doing some questionnaires and cognitive tests at the beginning. You will then receive a 4-week psychological intervention, delivered by a psychologist and supported by a mobile app. This will involve engaging with mobile-phone app-based activities alongside 30-minute session with a therapist. The therapy will involve doing tasks to you increase the number of meaningful activities you are doing. As well as looking at how this links with your mood. You will also be invited to take part in an interview about your experience of the therapy. This will take up to 30 minutes to complete via MS Teams.

This study is completely voluntary, and you can withdraw at any time. If you do take part in the study, you will receive up to £20 for your time.

If you would like to take part, we would love to hear from you! If there is anything you are unsure about and would like to find out more information, please contact us. Our details are below:

Name: Grace Lakey

Trainee Clinical Psychologist

Institute of Psychiatry, Psychology & Neuroscience, Kings College London

Email: grace.lakey@slam.nhs.uk

Number: 07596892154

(Monday – Friday 9am-5pm)

Name: Rutendo Kusosa

Trainee Clinical Psychologist

Institute of Psychiatry, Psychology & Neuroscience, Kings College London

Email: Rutendo.kusosa@slam.nhs.uk

Number: 07546560929
(Monday – Friday 9am-5pm)

Alira Health is researching the patient journey of Leucine-rich glioma-inactivated 1 antibody encephalitis (LGI1 AIE) patients by exploring the emotional and costs aspects of living with LGI1 AIE to inform broader understanding of the disease area.

Emotional aspects includes items such as the burden of the disease, difficulties living with LGI1 AIE, and effects on daily life.

Costs of LGI1 AIE to patients will encompass items such as costs of treatment, costs of getting a diagnosis, and effects of LGI1 AIE broadly from a financial perspective. Alira Health is seeking to interview patients in Germany, France, Spain, and Italy to understand to understand their unique perspective of living with LGI1 AIE.

Goals of the Study

Describe the emotional and cost elements of the LGI1 AIE patient journey, including pre-diagnosis, diagnosis and post-diagnosis phases
Qualify and quantify the burden of LGI1 AIE on patients
Identify unmet needs in the LGI1 AIE patient journey
Understand the impact of LGI1 AIE on quality of life of patients
Participant Criteria

Patients must be:

over the age of 18
officially diagnosed with LGI1 AIE
located in Spain or Italy.
Participation will be rewarded through a payment based on time spent and the patient’s country. Patients or caregivers may participate.

What will taking part involve for the participants?

Alira Health will conduct 60-90 minute interviews with patients and/or patient caregivers via remote video call on a platform such as Teams or Zoom. Following the interview, patients will be asked to fill out a short survey confirming some aspects of their journey.

Where will the meetings take place?

Meetings will take place during the week between 1-30 November, times are flexible based on participants’ schedules.

Will participant expenses be reimbursed?

No expenses are foreseeable

Contact

If you would like to find out more about the study, or you are interested in taking part, please contact our PPI manager, Emma Collins: emmac@encephalitis.info