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.
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 (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.
CLINICAL DRUG TRIALS
- 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
COGNITIVE AND BEHAVIOURAL STUDIES
- 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
Change in MND [Currently suspended due during COVID-19 restrictions]
- 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
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).