Take part in research
Our aim is to provide people with MND the opportunity to take part in research studies. Below we list research projects that currently recruit participants for their study. These do not always involve testing a treatment (clinical trials). Most are focused on understanding the causes of MND, and improving diagnosis, care and quality of life of people affected by the disease.
To get notified about new research opportunities by email, you may wish to sign up to our MND Research list and newsletter. You can also find the clinical research projects taking place in the UK on the UK MND Clinical Studies Group website.
Opportunities to participate in research are split by their area of focus:
Treatment trials
Testing potential treatments for MND in clinical trials
Symptom management
Identifying ways to manage symptoms associated with MND
Biomarker studies
Collecting biological samples to find unique fingerprints of MND
Improving wellbeing
Improving quality of life of people affected by MND
Other
National registers, improving clinical practice etc.
Treatment trials
BIIB067 (Tofersen)
Evaluating Tofersen to treat familial MND caused by mistakes in the SOD1 gene
Recruiting: People with asymptomatic SOD1-MND
Location: Sheffield
MND-SMART
Evaluating multiple drugs simultaneously in an innovative clinical drugs trial
Recruiting: People with ALS
Location: UK-wide
Reldesemtiv
Evaluating Reldesemtiv
Recruiting: People with ALS
Location: Liverpool, London
Triumeq
Evaluating Triumeq
Recruiting: People with ALS
Location: London
Symptom management
OptiCALS
A Randomised Controlled Trial to evaluate a nutritional management intervention, OptiCALS, for people living with ALS
Recruiting: People with ALS | their carers
Location: Specific locations within the UK, click the button below to find out where
VENTMND: exploring end of life decisions around use of ventilation
Understanding end of life decision making of patients with MND using home mechanical ventilation
Recruiting: People with MND | family members
Location: UK-wide (Remote)
TVLife
Understanding living with tracheostomy ventilation for MND and the implications for quality of life
Recruiting: People with MND | Family members | Healthcare professionals
Location: UK-wide (Remote)
Pressure ulcer prevention at home
Understanding ways to help prevent pressure ulcers at home
Recruiting: People with MND | Carers | Personal Assistants
Location: England-wide (Remote)
SETTLE
Investigating how to increase the strength of your cough by looking ways of improving a "cough assist" device
Recruiting: People with MND
Location: Specific locations within the UK, click the button below to find out where
Biomarker studies
ALS biomarker study
Collecting biological samples to search for biomarkers.
Recruiting: People with ALS | Healthy controls | Neurological controls
Location: London
AMBRoSIA: A Multicentre Biomarker Resource Strategy in ALS
Searching for unique fingerprints of MND for faster diagnosis.
Recruiting: People with ALS | First-degree relatives | Healthy controls
Location: UK wide
C9orf72 cohort study
Collecting biological samples to search for causes of C9orf72-related MND.
Recruiting: People with ALS | Family members | Healthy controls
Location: Oxford
MIND MAPS ALS
Using neuroimaging to understand the mechanisms of ALS.
Recruiting: People with ALS
Location: London
The Living Lab Protocol
Developing new technologies to help people with long-term diseases live in their home for longer
Recruiting: People with MND | Older adults (65+)
Location: London
Improving wellbeing
TONiC: quality of life in neurological conditions
Examining the factors influencing quality of life in neurological conditions.
Recruiting: People with MND
Location: UK-wide
Experiences of emotional distress in MND
Understanding the emotional experiences of people with MND and the effectiveness of the current tools used to measure emotional distress
Recruiting: People with MND | Carers
Location: UK-wide
Online peer-to-peer support programme for carers of MND
Understanding the impact of a virtual peer support programme on psychological wellbeing and caregiver burden on family caregivers of people with MND
Recruiting: Peer supporters | Carers
Location: UK-wide
Other studies
MND Register
Collecting information about every person living with MND in England, Wales and Northern Ireland.
Recruiting: People with MND
Location: England, Wales and Northern Ireland (Remote)
Psychological Aspects and Implications of Predictive Genetic Testing for MND
Online survey to understand the psychological impacts of predictive genetic testing and familial MND among at-risk relatives
Recruiting: People at risk of familial MND
Location: Remote
Exploring the acceptance of an early screening tool for neurodegenerative disease that uses 3D retinal imaging and AI
Investigating the factors that may influence an individual's decision to use a early screening tool
Recruiting: People with MND | Family members | Carers
Location: UK-wide
Neuro Digital Profiles Survey
Investigating the factors that affect the use of digital health technology
Recruiting: People with MND
Location: UK-wide
Neuro Digital: From Attitudes to Strategies
Investigating attitudes towards remote and digital care
Recruiting: People with MND | Carers | Healthcare professionals
Location: England-wide
Developing a stimulation-free remote motor unit number estimate for MND
Developing a novel, non-invasive muscle recording procedure to monitor MND progression remotely.
Recruiting: People with MND | Carers | Family members
Location: London