MND research studies

How do I get involved?

There are many healthcare research projects taking place. You can find information below about the research studies that are currently open to recruitment across the UK. All studies have gained the relevant ethical and research governance approvals to recruit participants in the UK.

We recommend that you discuss research opportunities with your regular neurological team.

Some studies, particularly interventional trials (studies where participants receive a study treatment, or "intervention", to evaluate the effect of that intervention), may require you to be receiving clinical care from the site taking part in the trial.

If there is a specific study you are interested in and your care team is not taking part, they can review the eligibility criteria for the study and if you are potentially eligible they may be able to arrange a referral, with the intention that you are reviewed for potential research opportunities.

Be aware that all studies are required to have eligibility criteria to ensure that the study is carried out safely and the research question is answered, therefore it might be that some of the studies may not be suitable for you to participate in.

You can also Search for research sites near you or find out more about What's involved in carrying out a clinical research project?

Take part in research from your own home

Some studies allow you to sign up yourself and take part in research online or remotely (for example, by telephone or video-call), without the need for you to physically attend a clinical site. Studies that you can currently sign up for yourself and take part in remotely are:

Join MND Research

Join MND Research (previously called Telehealth in MND – Research, TiM-R) is a digital platform designed for people living with MND. People are matched to studies they may be able to take part in, both online, nationally and in their local area. The service connects registered volunteers with researchers across the UK who are looking for people to join their studies. More about Join MND Research

Find out more

ALS Biomarkers Study

The ALS Biomarkers Study allows you to donate biological samples for research using simple at-home collection kits.

Find out more

Types of studies

1. Interventional studies

Interventional studies involve participants receiving a study treatment, or "intervention", to evaluate the effect of that intervention.

The tables below have been put together to summarise the key eligibility criteria, to help clinical care teams support their patients to identify opportunities that may be suitable for them. They contain complex information and are intended to be used by healthcare professionals. Detailed inclusion/exclusion criteria for each trial can be found on each study's webpage (available through the hyperlinks).

Clinical trials - eligibility sumary

EXPERTS-ALS

A 'pre-trial' platform to screen candidate drugs in people living with Amyotrophic Lateral Sclerosis (ALS) (a type of MND), looking for early signals of disease-slowing such as lowering of the blood levels of a protein called neurofilament light chain (NFL). More about EXPERTS-ALS

FUNCtion ALS

A phase 1/2 trial to evaluate TRCN-1023 in patients with Amyotrophic Lateral Sclerosis (ALS) (a type of MND) Study in set-up, opening soon More about FUNCtion ALS

MND-SMART

A platform study currently investigating tacrolimus in patients with MND. More about MND-SMART

Nura Bio Phase 1b/2 study

A study to investigate VNB-4746 in patients with Amyotrophic Lateral Sclerosis (ALS) (a type of MND). Study in set-up, opening soon More about Nura Bio Phase 1b/2 study

PREVAiLS

A phase 3 study to investigate pridopidine in patients with Amyotrophic Lateral Sclerosis (ALS) (a type of MND). More about PREVAiLS

PIONEER-ALS

A phase 1/2 study to investigate Vtx-002 in patients with Amyotrophic Lateral Sclerosis (ALS) (a type of MND). Study in set-up, opening soon More about PIONEER-ALS

No studies in this category are currently open to recruitment

Tofersen (SOD1-ALS)

Tofersen is a new treatment that is effective for the 2% of people with MND whose disease is caused by a fault in the SOD1 gene. Tofersen is currently in the process of being assessed to become available on the NHS. This process will take several months, at least. In the meantime, the manufacturer has made tofersen available to patients free of charge through an Early Access Programme (EAP), as long as the NHS provides the staff time and resources. However, as it is not yet commissioned by the NHS, capacity at MND care centres can be limited and localised. More about the tofersen EAP

2. Observational studies

These are studies where volunteers are observed, or researchers look at data that has already been collected. No attempt is made to change the outcome, for example, no treatment is given.

Observational studies are a key part of research - they help researchers know what happens in real-life situations. These studies often help to develop ideas for future research that can then be taken forward and tested in interventional studies.

Cough And Secretion problems in people with MND (CAS-MND)

Evaluating people with MND and their caregivers who have or support the management of cough and secretion issues, to identify the barriers and facilitators. More about CAS MND

Decision aid for genetic testing

This study is aiming to develop a patient decision aid to support genetic testing in MND. More about Decision aid for genetic testing

DENIM

This study is exploring if providing intensive home support allows patients to use their NIV for longer periods and get more benefit. More about DENIM

Exploring Experiences and views of MND Treatments

This project is exploring what is most important to patients when considering medications for MND, to inform current and future drug development to fit the needs of what people with MND really want. More about Exploring view of MND Treatments

Management of choking in people living with MND

Exploring the issue of choking in people living with MND, and developing treatment guidance. More about Management of choking

MND Together

Exploring what is going well and what is going wrong with the coordination of MND services. More about MND Together

Opti MND

Exploring if different ways of providing MND care leads to different outcomes for family carers and the person living with MND. More about Opti MND

TIME

Telehealth in MND (TiM) is a remote monitoring system for people with MND and their carers. This project aims to develop and evaluate TiM-Care and a new system is called TiM-Research. More about TIME

Understanding Preferences of Drug Treatments

Exploring the value that people with MND place on different characteristics of their drug treatments. More about Understanding preferences of drug treatments Study in set-up, opening soon

Join MND Research*

CHiMND*

A study to explore the roles, responsibilities, and care relationships of paid homecare workers who support people living with MND to manage complex interventions at home. More about CHiMND

ACORN

This study is investigating possible causes of nerve damage in patients carrying a genetic abnormality in the gene known as C9orf72. More about the ACORN study

MND Register

The study is led by Professor Ammar Al-Chalabi at King's College London and by Professor Kevin Talbot at Oxford University. It will collect information about every person living with MND. More about the MND Register

Trajectories of Outcome in Neurological Conditions (TONiC)

TONiC is a national study examining the factors that influence quality of life in people with neurological conditions. More about TONiC

CARE-MND*

CARE-MND is a platform to integrate clinical care with research for people with MND across Scotland. Visit CARE MND's website [link to external site]

ALS Biomarkers study

The main goal is to establish a biological repository that covers the natural history of the disease and provides the experimental platform to test novel biomarkers. More about ALS biomarkers

Motor System Genomics

Studying biological fluid samples collected from MND patients, family members, disease controls (patients with other motor system disorders and neurological conditions) and healthy controls to identify markers that could be used to aid diagnosis. More about motor system genomics

MND microbiome study

Studying the role of the gut microbial community (often referred to as the microbiome) in neurological disease by studying and comparing biological samples from people with MND, family members and healthy controls. More about the MND microbiome study

CNS tissue donation*

There are several post-mortem tissue banks, which is where central nervous system (CNS) tissue can be donated, after someone's death, for use in research projects. Visit the UK brain banks network website [link to external site]

Measuring muscle health in MND

Aiming to improve measuring muscle health using ultrasound imaging for earlier MND diagnosis and monitoring treatment. More about Measuring muscle health in MND

MND GENETICS

The purpose of this study is to genetically screen 150 MND patients and 50 family members, to identify genetic variations causative for MND. More about MND GENETICS

MONITOR ALS

Investigating changes in motor neurone activity in people with ALS, with the aim of identifying non-invasive biomarkers that could help with earlier diagnosis and monitoring of disease progression. More about MONITOR ALS

*Non-portfolio studies

Studies marked with asterisk (the star symbol *) are studies happening within the UK that are not included on the NIHR Research Delivery Network (RDN) Portfolio of studies. The UK MND Clinical Studies Group cannot actively monitor these studies, but we provide details of all studies that we are made aware of, to allow potential participants to liaise with the study teams directly if they would like to find out more.

Page updated

Report abuse