Our research

MND SMART is a multi-arm study meaning that, unlike typical clinical trials which test a single treatment, MND-SMART will test more than one at the same time. Trial participants taking the different treatments will be compared with a group who receive a dummy drug, called a placebo.

MND-SMART has an ‘adaptive’ design. This means medicines being studied can change according to emerging results. Treatments shown to be ineffective can be dropped and new drugs can be added over the duration of the study. This will allow many treatments, over time, to be efficiently and definitively evaluated.

This is a phase 2 / 3 trial which means if drugs appear to be effective, they will seamlessly transition into phase 3 without the need for additional permissions or trial participants needing to complete a phase 2 trial and join a separate phase 3 trial.

MND SMART is currently studying one drug Tacrolimus which is being evaluated against a placebo. The first three drugs studied on the trial, memantine, Amantadine and trazodone, were removed from the trial in September 2023 due to lack of benefit.

The MND Register is a national Register for England, Wales and Northern Ireland with the aim to collect and store information about every person with MND in the UK. The aim is to understand how many people currently have MND, how this might change over time, to understand risk factors based on gender and ethnicity. It is hoped that collecting information about people with MND will help researchers identify possible causes of the disease and understand disease progression.

Opti-MND is a University of Leicester study aiming to examine health and social care in the UK for families living with MND. The study will examine how differing care pathways in the UK impact on individuals living with MND and their families and friends who support them. Locally we a recruiting people living with MND and their carers to complete a survey about their experiences. The study aims to understand and improve MND care nationally.

The gRoWE study is a University of East Anglia study seeks to understand the experiences of those receiving MND care under current NICE guidelines. We are recruiting people living with MND and their partners, family or carers to take part in a one-hour phone or online interview with gRoWE researchers. The study aims to look at the suitability of current care guidelines and hopes to contribute to improved MND care in the UK.

The ASTRALS study is a phase 2 commercial study for people with ALS looking at the efficacy and safety of novel therapy VHB937 developed by Novartis. VHB937 is a drug that targets a type of cell called microglia. Microglia are immune cells in the nervous system that respond to infection or injury and remove any damaged or dead cells. Microglia have proteins on their surface and one of these is called TREM2, which when active can make microglia more protective to other cells such as motor neurons. Research has suggested that VHB937 can improve the survival of neurons, it is hoped a monthly infusion of VHB937 may slow disease progression in ALS.

There is some evidence to suggest that better nutrition may help prolong life in people living with ALS and that personalised dietary targets may be of benefit. The Opti-CALS study is testing a complex support package designed to improve nutritional management and help people living with ALS to meet a personalised dietary intake. Participants are randomised to standard care or to use the Opti-CALS portal where they can access dietary assessment tools, find dietary advice on meeting calorie goals and information on how to manage common barrier to eating and drinking faces by those living with ALS.