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, you may wish to join our MND Research list.

To limit the risk of COVID-19 transmission and to safeguard the health of people living with MND, please note that recruitment for most clinical trials have been paused. Some trials are ongoing for patients who are already enrolled, in the safest way possible. Aside from clinical trials, there are other studies listed that will help to improve support to people living with MND, their families and carers, and increase our knowledge and understanding of the disease. Your participation in any of these would be greatly appreciated.

We encourage you sign up to our MND research list and newsletter to receive updates on the evolving situation surrounding MND research and new opportunities to participate in studies that are still taking place. 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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Biomarker studies
Collecting biological samples to find unique fingerprints of MND

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Symptom management
Identifying ways to manage symptoms associated with 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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TUDCA clinical trial
Testing the safety and effect of tauroursodeoxycholic acid (TUDCA) on disease progression.
Recruiting: People with ALS (Paused)
Location: Sheffield, Preston, Salford, Liverpool, Plymouth, Dublin

 

Biogen SOD1 ASO trial (VALOR)
Testing the safety and effect of BIIB067 antisense oligonucleotide
Recruiting: People with SOD1-mediated MND (Paused)
Location: Sheffield

MND-SMART
Evaluating multiple drugs simultaneously in an innovative clinical drugs trial
Recruiting: People with ALS (Paused)
Location: Edinburgh then across the UK

 

Biogen C9ORF72 ASO trial
Testing the safety, tolerability and pharmokinetics of BIIB078 antisense oligonucleotide administered intrathecally
Recruiting: People with C9ORF72-mediated MND (Paused)
Location: Sheffield and London

Symptom management

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Remote breathing management
Validation of a new, hand-held device in the role of the management of breathing failure with MND.
Recruiting: People with MND
Location: Cambridge

PostGas
A multi-centre evaluation of the post-gastrostomy management
Recruiting: People with MND (Paused)
Location: UK-wide

 

ProSec 3
A multi-centre evaluation of excessive saliva management
Recruiting: People with MND (Remote)
Location: UK-wide

Biomarker studies

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ALS biomarker study
Collecting biological samples to search for biomarkers.
Recruiting: People with ALS | Healthy controls | Neurological controls (Paused)
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 (Paused)
Location: London

C9orf72 cohort study
Collecting biological samples to search for causes of C9orf72-related MND.
Recruiting: People with ALS | Family members | Healthy controls (Paused)
Location
: Oxford

Improving wellbeing

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NeuroLTC: Care needs in neurological conditions
Identifying and understanding care needs in long-term neurological conditions.
Recruiting: People with MND | Carers (Remote)
Location: UK-wide

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

Acceptance and Commitment Therapy (COMMEND)
Developing a new form of psychological therapy to improve quality of life in people with MND.
Recruiting: People with ALS, PMA, PLS (TBC)
Location: London, Sheffield, Northern Lincolnshire and Goole, South Wales, Newcastle, Plymouth and Leicestershire (more sites to follow soon)

Healthtalk: Experiences of inherited MND
Improving understanding of experiences with inherited MND
Recruiting: People with inherited MND, partners and other relatives, including family caregivers.
Location: UK-wide (Remote)

Other studies

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MND Register of England, Wales and Northern Ireland
Collecting information about every person living with MND.
Recruiting: People with MND (Remote)
Location: Anywhere in England, Wales and Northern Ireland

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262