MND research studies

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

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?

How can I get involved?

We recommend that you discuss opportunities for taking part in research 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 clinical care team is not taking part, they can review the eligibility criteria for the study and if you are potentially eligible they can arrange a clinical referral, with the intention that you are reviewed for potential research opportunities.

Take part in some studies from your own home

Some studies allow you to sign up yourself and take part in the research online or remotely – 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:

Types of studies

1. Interventional studies

Studies where participants receive a study treatment, or "intervention", to evaluate the effect of that intervention.

Clinical trials - eligibility sumary
Drug trials

ANQUR

A phase 1 (first-in-human) study to investigate the safety and tolerability of QRL-201 in patients with Amyotrophic Lateral Sclerosis (ALS) (a type of MND).   More about ANQUR

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

MND-SMART

A study to investigate amantadine in patients with MND.   More about MND-SMART

Studies recruiting people with specific genetic mutations:

FUS-ALS trial

A study to evaluate ION363 administered to patients with Fused in Sarcoma mutations (FUS-ALS)   More about Ionis FUS-ALS trial

MAGNET - lithium arm

A study to investigate lithium carbonate in patients with a mutation in the UNC13A gene (genetic testing is carried out as part of screening assessments for the study).  More about MAGNET

Other interventional studies

OptiCALS RCT

Testing a support package (the 'OptiCALS' intervention) designed to improve nutritional management for people living with Amyotrophic Lateral Sclerosis (ALS) (a type of MND).   More about OptiCALS RCT

Virtual peer-to-peer support programme for carers of MND

This study is assessing whether a 12-week virtual peer support programme can help informal carers of people living with MND.   More about the virtual peer support programme for carers

2. Observational studies

Studies where participants are observed, or looking 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. 

Care management

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 

Developing monitoring tools

This study will assess whether activity monitors can detect changes in behaviour in people living with MND.  More about Developing monitoring tools

EarSwitch - Phase A

This study is aiming to expand a prototype ear-mounted communication device and gather user feedback.  More on EarSwitch Phase A

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

TVLife

This study aims to better understand living with tracheostomy ventilation (TV) for people with MND, and the implications for quality of life.  More about TVLife

Diagnostic projects

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

Biomarker discovery

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

C9orf72 Cohort Study

The study aims to identify a cohort of C9orf72 patients and asymptomatic carriers and the characterise the disease course (including pre-dating the onset of clinical symptoms in pre-symptomatic carriers) using biomarkers, with supporting clinical and genetic data.   More about the C9orf72 Cohort study

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

Population studies

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

Non-portfolio studies

There are also studies happening within the UK that are not included on the NIHR Research Delivery Network (RDN) Portfolio of studies [link to external site]. The MND Clinical Studies Group cannot actively monitor these studies, but we provide details of the 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.

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]

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]