IMMUNOTHERAPY FOR REFRACTORY STATUS EPILEPTICUS

The West Midlands Neurology and ICU teams aim to establish a research platform to conduct trials into refractory status epilepticus. We are coordinating a national survey of neuroloigists and intensive care physicians to understand the barriers to treatment. The survey should take no more than 5 minutes to complete. https://forms.gle/oA7ghUH6eE9HNY3R6.

TDCS FOR MITOCHONDRIAL EPILEPSY

The TRANSFORM study tests whether transcranial DC stimulation of the brain can help to calm epileptic seizures in people with mitochondrial disease. The study is open to people with mitochondrial disease and drug-resistant focal epilepsy who show anatomically relevant changes in the brain (neuroimaging or EEG). If you are interested to know more, or would like to participate, please contact us: Dr Albert Lim via Albert.Lim@nhs.net or Dr Katrin.Bangel@nhs.net. More information: www.isrctn.com/ISRCTN18241112

NATIONAL AUDIT OF DEMENTIA

The National Audit of Dementia is conducting a service mapping exercise of dementia diagnostic services across England. So far, the audit has mostly only included community based memory assessment services, but they are keen to also include neurology-led services in acute trusts. If you lead a cognitive neurology service, please use the following link below to submit details of your service and take part.

GENOME SEQUENCING IN EPILEPSY

The University of Sheffield is running a survey to understand neurologists' (of all grades) knowledge, understanding and skills in relation to genome sequencing for adults with epilepsy. This is part of a project to develop resources to support mainstreaming of epilepsy genomic testing. The survey is online and takes around 10 minutes. If you leave an email address there is a prize draw for £50 amazon voucher. https://shef.qualtrics.com/jfe/form/SV_9KtfUO8BxE4CH0a

UNMET NEEDS IN BRAIN INJURY

The brain injury HRC are asking anyone involved in diagnosis and treatment of brain injury to help identify unmet needs at any stage of the care pathway. They are keen to get your initial thoughts through a short survey: https://forms.office.com/e/JZAnvGT2dZ

NEW TECHNOLOGIES IN EPILEPSY CARE

We invite you to participate in a survey focused on the role of technology and wearable devices in the care of people living with epilepsy. The study aims to gather valuable insights from healthcare professionals, including physicians and nurses, to better understand the perspectives on the current and future use of wearable devices in epilepsy care. The survey is designed to be brief yet comprehensive and will only take approximately 10 minutes to complete. Deadline: 30th September 2025 https://survey.kuleuven.cloud/915565

TIMING OF DIRECT ORAL ANTICOAGULATION FOLLOWING ACUTE ISCHAEMIC STROKE WITH ATRIAL FIBRILLATION

Clinical uncertainty persists about the optimal timing of direct oral anticoagulation (DOAC) initiation after acute ischaemic stroke in patients with atrial fibrillation. Current guidelines do not provide clear or consistent recommendations. This situation presents a frequent dilemma on the stroke unit because of the competing concerns regarding the prevention of early recurrent ischaemic stroke (potentially favouring early DOAC initiation) while reducing the risk of haemorrhagic transformation (potentially favouring delayed DOAC initiation). Many of the initial large randomised controlled trials involving DOACs excluded patients in the first 14 days from stroke onset. Recent trial data, including from the OPTIMAS trial in the UK, Deadhave provided new data about the optimal timing of DOAC initiation. 

This short survey (approx. 5 minutes) aims to understand the current practices and opinions of UK physicians regarding the timing of DOAC initiation after acute ischaemic stroke in patients with atrial fibrillation. We would be very grateful if you could complete these questions about how you currently treat patients in routine clinical practice on the stroke unit.

POLG-RELATED MITOCHONDRIAL DISEASE RESEARCH
The study, Clinical trial readiness for POLG-related mitochondrial disease and ataxia: a prospective, longitudinal study identifying sensitive and ecologically valid biomarkers (C4TR-POLG), is currently open for recruitment in Newcastle. This study is open to people aged 16 – 75 years with a genetically confirmed diagnosis of POLG-related mitochondrial disease. If you want to learn more about this study, please get in touch with the study team at nuth.mitoresearch@nhs.net or yi.ng@ncl.ac.uk.

DefINe: TESTING THE USE OF DEFERIPRONE IN PEOPLE WITH NEUROFERRITINOPATHY
Neuroferritinopathy is a disorder caused by a mutation (fault) in a gene which leads to iron gradually building up in the brain. The build-up of iron eventually leads to the death of brain cells (called neurons), and certain brain regions that help control movement are particularly affected. There are no treatments known to reduce/slow the progression of neuroferritinopathy. The trial is being conducted in Cambridge. Participants will need to attend four in-person visits over a 12-month period, as well as have monthly phone calls and regular blood tests between the in-person visits. To be eligible, participants must have a genetic diagnosis of neuroferritinopathy, be aged 16 or over, and fulfil additional eligibility criteria. Further information is available from the trial team:  add-tr.mitoteam@nhs.net   

Neuromodulation for Drug-Resistant Epilepsy

This survey is designed to canvas UK clinician perspectives on neuromodulation including Deep Brain Stimulation (DBS) and Vagus Nerve Stimulation (VNS) for drug-resistant epilepsy, with a view to informing clinical trial development. The survey has been endorsed by the British Branch of the ILAE and the British Society of Stereotactic and Functional Neurosurgery. UK-based consultants in (adult or Take part in the survey.

PRESCRIBING FOR NEURODEGENERATIVE DISEASE'S
Aston University is leading a study that aims to positively change prescribing practices for Parkinson’s Disease (PD) and other neurodegenerative diseases (NDD). Clinicians’ views and experiences are essential to making changes happen. However, recruitment in this area is one of the most difficult.
If you are a clinician treating PD or other NDD and recognise a need to ensure excellent prescribing practices, please consider participating in our online survey. 

CUREDRPLA GLOBAL PATIENT REGISTRY
Ataxia UK and CureDRPLA have launched the CureDRPLA Global Patient Registry, the only existing registry of DRPLA patients. This registry is designed to house patient-entered data; when joining the registry, participants can answer questions about the DRPLA diagnosis, medical history, activities of daily living, etc. Participation is available to all DRPLA patients and families regardless of country of residence and is accessible in different languages.
Further information.

THE UK MYASTHENIA DATABASE
The University of Oxford have obtained ethical approval for the first UK Myasthenia database. The database is funded by Myaware and will collect data on patients of any age with any form of myasthenia. The data will then be made available for research in anonymised form. The team are eager to include as many patients as possible from across the UK. If you see patients with myasthenia and would like to know more, please email the myasthenia clinical research fellow, Mohammad Ashraghi.

TDCS FOR MITOCHONDRIAL EPILEPSY PATIENTS
The TRANSFORM study tests whether transcranial DC stimulation of the brain can calm epileptic seizures in people with mitochondrial disease. The study is now open to people with mitochondrial disease and drug-resistant focal epilepsy who show anatomically relevant changes in the brain (neuroimaging or EEG). Further information.  If you are interested to know more please contact: Prof Robert McFarland at +44 191 2825225, Dr Albert Lim via Albert.Lim@nhs.net or Katrin Bangel via Katrin.Bangel@nhs.net

MS PREGNANCY REGISTER
The UK MS Pregnancy Register is recruiting women who have MS and are currently pregnant. They do not need to be taking DMT, and women with all types of MS and disability levels are eligible. Women can sign up here.