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.
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
Methodology Study of Novel Outcome Measures to Assess Progression of ALS
This study’s primary aim is to identify assessment measures that are more sensitive to disease progression in participants with ALS type Motor Neurone Disease and put them in rank order over 6 and 12 months. Read more
RESPIRATORY MANAGEMENT
Call-Me study
In this study a custom-designed location detecting smartphone app will be used to send predefined text messages to specialist individuals on arrival of a patient with ALS in an A&E department. The specialist will provide intervention advice and education to A&E staff. 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
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
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
Tongue EIM
Assessing a novel device to assess if it is able to identify differences between patients with MND and healthy volunteers over time. 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
BioMOx
Phase 1 of The BioMOx project (The Oxford Study for Biomarkers in MND/ALS) ran from 2009 to 2013 and studied 72 MND patients (of all disease sub-types, including PLS) for one day every six months. In this way we carefully followed a unique cohort of MND patients through their individual disease pathway, and generated some strong candidate biomarkers. Phase 2 of BioMOx is now developing these candidates for use in the clinic, and to look for the very earliest detectable changes. 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
POPULATION STUDIES
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