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:

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Treatment trials
Testing potential treatments for MND in clinical trials

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Symptom management
Identifying ways to manage symptoms associated with MND

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Biomarker studies
Collecting biological samples to find unique fingerprints of MND

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Improving wellbeing
Improving quality of life of people affected by MND

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Other
National registers, improving clinical practice etc.

Treatment trials

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MND-SMART
Evaluating multiple drugs simultaneously in an innovative clinical drugs trial
Recruiting: People with ALS
Location: UK-wide

Symptom management

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DiAMoND: decision aid for people living with MND considering gastrostomy
Interview to gather thoughts on the development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy (DiAMoND).
Recruiting: Carers | Healthcare professionals
Location: UK-wide (Remote)

The organisation and delivery of decision support to people with MND making the decision to have a gastrostomy placed
Understanding the practice and attitudes towards supporting people with MND making the decision to have a gastrostomy feeding tube placed
Recruiting: Healthcare professionals
Location: UK-wide (Remote)

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)

MND Neck Collar Survey
Developing a bespoke neck collar for people living with MND
Recruiting: People with MND
Location: UK-wide (Remote)

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

Biomarker studies

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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

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TONiC: quality of life in neurological conditions
Examining the factors influencing quality of life in neurological conditions.
Recruiting: People with MND
Location: UK-wide

The MND Diary Project 
Investigating coping and resilience in family/carers of people living with MND
Recruiting: Now recruiting families and 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

Factor-MND: understanding factors affecting MND family carer's wellbeing
Understanding the factors affecting the wellbeing of carers of people with MND
Recruiting: Carers
Location: UK-wide (remote)

MyLifeTool: Evaluating a self-management tool 
Understanding experiences of using the MyLifeTool for people with MND
Recruiting: People with MND
Location: North East of England or North Cumbria

Other studies

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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

Understanding how carers of people with MND experience palliative care in the UK
Developing a deeper understanding of carer's experiences of palliative care in the UK
Recruiting: Carers
Location: UK-wide

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: From Attitudes to Strategies
Investigating attitudes towards remote and digital care
Recruiting: People with MND | Carers | Healthcare professionals
Location: England-wide

Neuro Digital Profiles Survey
Investigating the factors that affect the use of digital health technology
Recruiting: People with MND
Location: UK-wide

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262