There are many clinical research projects taking place across the UK. This page summarises 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. Please 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 moved to this page. Over time, we hope 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 MND.
We recommend that you discuss opportunities for taking part in research with your regular neurological team. Most studies, particularly interventional trials (studies where participants receive a study treatment, or “intervention”, to evaluate the effect of that intervention), require you to be receiving clinical care from the site taking part in the trial. If there is a specific trial you are interested in and the neurological team providing your care is not taking part, they can review the eligibility criteria for the trial and if you are potentially eligible they can arrange a clinical referral, with the intention Ven 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), including the studies below:
Alternatively, to search for research sites near you, click here.
Multicentre Study With an Open-Label Extension to Evaluate the Efficacy and Safety of Ravulizumab in Patients With Amyotrophic Lateral Sclerosis (ALS). Read more
A Study to Evaluate the Efficacy, Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of BIIB067 Administered to Adult Subjects with Amyotrophic Lateral Sclerosis (ALS) and Confirmed Superoxide Dismutase 1 Mutation. Read more
A Phase 1 Multiple-Ascending-Dose Study to Assess the Safety, Tolerability, and Pharmacokinetics of BIIB078 Administered Intrathecally to Adults with C9ORF72-Associated Amyotrophic Lateral Sclerosis. Read more
A phase 2/3 multi-arm adaptive randomised controlled trial in patients with motor neurone disease (MND). Read more
A Phase 3, multi-centre, randomised, double-blind, placebo-controlled, parallel-group study to evaluate Safety and Efficacy of Tauroursodeoxycholic (TUDCA) as add-on Treatment in Patients Affected by Amyotrophic Lateral Sclerosis (ALS). Read more
The overall aim of this study is to identify the most appropriate outcome measures to detect meaningful clinical differences in breathing and cough muscle strength which can be used in future studies to evaluate the effectiveness of new treatments. Read more
The study aims to evaluate current clinical practice in relation to post-gastrostomy nutritional care of patients with MND; understand the nutritional requirements of patients, particularly the quantity and quality of nutritional support that patients receive after gastrostomy; and to explore the factors than can lead to continuing weight loss after the procedure. Read more
The aim of this study is to develop and pilot a web-based decision aid to support individuals with motor neurone disease (MND) choose whether to have a gastrostomy feeding tube. Read more
This study aims to validate patients completing the ALSFRS-R themselves online. Read more
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. Read more
This study aims to assess how everyday life and functioning factors associate with cognitive and behavioural impairment in people with MND and how this effects the family unit. Read more
The study aims to compare the ability of MND-specific screening assessments to identify people as cognitively or behaviourally impaired, to determine which is the best neuropsychological screening test of cognitive impairment in MND. Read more
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. Read more
NiSALS is an international collaboration of neuroscience centres involved in research in MND. Read more
The purpose of this study is to genetically screen 150 MND patients and 50 family members, to identify genetic variations causative for Motor Neurone Disease Read more
This study will analyse thousands of samples taken from participants. They will look at how motor neurone disease 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. Read more
The main goal of this study is to establish a biological repository that covers the natural history of the disease and provides the experimental platform to test novel biomarkers to evaluate prognosis and treatment response in affected individuals and to help develop clinical trials. Read more
We are 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. Read more
This study aims to assess techniques for measuring glutathione levels in the central nervous system of MND patients and controls using MRI, and also in CSF and blood samples. It may then be possible to use these techniques in future trials of NRF2-activating drugs to assess how well they work in the body. Read more
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, including progression rates and regional involvement. Read more
TONiC is a national study examining the factors that influence quality of life in people with neurological conditions. Read more
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. Read more
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 does not actively monitor them. We provide details of the studies we are made aware of below, to allow potential participants to liaise with the study teams directly if they wish to find out full details:
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 MRC Directory of Tissue Banks (external site – opens in a new tab).
VentMND: Interview study to explore experiences of end-of-life decisions around the use of home ventilations (such as NIV, Nippy, tracheostomy) in MND. Click here to see the recruitment flyer or visit the study website (external site – opens in a new tab).