Research studies

There are many clinical research projects taking place across the UK. We have summarised the clinical trials, studies and scientific projects 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 research question is answered, therefore it might be that some of the studies listed may not be suitable for you to participate in.

Once studies have closed to recruitment, they are listed on our closed to recruitment page. Over time, this will become a central source of information to inform people about the results of research studies, and how their outcomes may contribute towards improving the lives of people affected by motor neurone disease (MND).

Search for research sites near you

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

Some clinical research 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.

Examples include:

Types of studies

Drug trials

ADORE

A study to investigate the efficacy and safety of oral edaravone in patients with MND. More about ADORE

HIMALAYA

A study to investigate the efficacy and safety of SAR443820 in patients with MND. More about HIMALAYA

MND-SMART

A study to investigate memantine hydrochloride and trazodone hydrochloride in patients with MND. More about MND-SMART

Phoenix

A study to investigate TUDCA (tauroursodeoxycholic acid) and sodium phenylbutyrate (PB) in patients with MND. More about Phoenix

Studies recruiting people with specific genetic mutations:

Focus-C9

A study to evaluate WVE-004 administered to patients with C9orf72-associated MND or frontotemporal dementia (FTD). More about Focus-C9

FUS-ALS trial

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

ATLAS

A study to evaluate BIIB067 when started in clinically pre-symptomatic adults with a confirmed Superoxide Dismutase 1 (SOD1) mutation More about ATLAS

Cognitive and behavioural studies

COMMEND randomised controlled trial

This study aims to establish the clinical and cost effectiveness of acceptance and commitment therapy (ACT) plus usual multidisciplinary care for people with MND compared to usual multidisciplinary care alone. More about COMMEND

MiNDToolkit feasibility study

This study is assessing the feasibility of using a newly developed toolkit with caregivers to detect changes in behaviour and/or thinking of patients with MND. More about MiNDToolkit

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

Care management

Remote surface EMG in MND

A feasibility study of home monitoring in MND using remote surface electromyography. More about Remote surface EMG

RHAPSODY

Investigating the feasibility of administration of a speech battery and the use of speech-based biomarkers for the clinical assessment of common neurodegenerative and psychiatric disorders in a remote setting. More about RHAPSODY

Nutritional management

OptiCALS RCT

Testing a support package (the 'OptiCALS' intervention) designed to improve nutritional management for people living with ALS, also known as motor neurone disease. More about OptiCALS RCT

DiAMOND (phase 3)

Feasibility testing of a web-based decision aid for people with MND considering a gastrostomy. More about DiAMOND

Diagnostic projects

Novel Electrical Impedance Spectroscopy

Assessing if electrical impedance spectroscopy can be used as a quick, simple, painless way of diagnosing MND. More about this study

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

MIND-MAPS-ALS

Using PET and MRI brain scans to explore how brain activity is affected in ALS. More about MIND-MAPS-ALS

Biomarker discovery

AMBRoSIA

This study will analyse thousands of samples taken from participants and look at how MND progresses in different people. This will help us better understand the various types of MND and how each type affects those living with the disease. More about AMBRoSIA

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

Population studies

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

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 eligible to be included on the UKCRN Portfolio of studies. The MND Clinical Studies Group is not responsible for these studies and cannnot actively monitor them. We provide details of the studies that we are made aware of below, to allow potential participants to liaise with the study teams directly if they would like to find out more.

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

VentMND

Interview study to explore experiences of end-of-life decisions around the use of home ventilations (such as NIV, Nippy, tracheostomy) in MND. See the recruitment flyer (PNG, 961KB) Visit the study website