UK MND Research Studies

UK MND Research & Clinical Trials

There are a large number of research projects taking place, this page summarises clinical projects and the scientific projects that patients, carers and family members can get involved in.  All studies have gained the relevant ethical and research governance approval to recruit in the UK. Please be aware that all studies are required to have inclusion and exclusion 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.

Alternatively, to search for research sites near you, click here.

Once studies have closed to recruitment, they are moved to this page.

CLINICAL DRUG TRIALS

Biogen SOD1

A Phase 1, Placebo-Controlled, Single and Multiple Ascending Dose Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of BIIB067 Administered to Adult Subjects with Amyotrophic Lateral Sclerosis (ALS). Read more

MIROCALS

This study investigates the efficacy & safety of low-dose IL2 therapy for 18 months as an add-on therapy with riluzole, and compares the efficacy and safety to riluzole plus placebo in recently diagnosed ALS patients. Read more

ASSESSMENT OF TREATMENTS

 

RESPIRATORY MANAGEMENT

TRICALS Respiratory Registry

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

 

NUTRITIONAL MANAGEMENT

PostGas Study

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

HighCALS intervention development study

HighCALS is a large programme of research to develop and test a nutritional support framework for people with MND. This part of the project aims to find out about MND patients’, carers’ and healthcare professionals’ views on what promotes or prevents best nutritional practice. We will use this information to  develop and test a nutritional support package for people with MND. Read more

SYMPTOM MANAGEMENT

ProSec Study

The findings of this research will provide a comprehensive description of the burden of saliva problems for individuals living with MND and how they are currently managed. Read more

CARE MANAGEMENT

Improving support for family and friends caring for people with MND

Developing an assessment tool to ensure practitioners/clinicians can give support to family carers that is timely and fits their individual needs. Read more

A feasibility study of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND)

This study aims to assess the feasibility and acceptability of a psychological intervention for people with MND. Read more

ALSFRS-R Online Validation Study

This study aims to validate patients completing the ALSFRS-R themselves online. Read more

COGNITIVE AND BEHAVIOURAL STUDIES

Change in MND

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

Measuring Cognitive and Behavioural Change in ALS

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

DIAGNOSTIC PROJECTS

Using MRI to investigate energy metabolism

The aim of the MUSCLE ENERGY project is to develop imaging biomarkers in MND. Read more

NiSALS – Contributing clinical MRI scans to Multi-centre collaborations

NiSALS is an international collaboration of neuroscience centres involved in research in MND. Read more

MND GENETICS

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

BIOMARKER DISCOVERY

AMBRoSIA

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

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 to evaluate prognosis and treatment response in affected individuals and to help develop clinical trials. Read more

 

Motor System Genomics

We are studying biological fluid samples from MND patients, family members of the patients with MND, disease control (patients with other motor system disorders and neurological conditions) and healthy controls to identify markers that could be used to aid diagnosis. Read more

NRF2 Biomarkers Study

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

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, including progression rates and regional involvement. Read more

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. Read more

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. Read more