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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TUDCA clinical trial
Testing the safety and effect of tauroursodeoxycholic acid (TUDCA) on disease progression.
Recruiting: People with ALS
Location: Sheffield, Preston, Salford, Liverpool, Plymouth, Dublin

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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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
Location: UK-wide

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

Measuring Cognitive and Behavioural Change in ALS
Testing whether different screening tools lead to similar rates of diagnosed changes in thinking, language and behaviour.
Recruiting: People with MND | Healthy controls
Location: UK-wide (Remote)

The Earswitch in MND
Questionnaire assessing the potential for a new communication device in earphones by establishing what proportion of people can move/control a small muscle in the ear.
Recruiting: People with MND
Location: International (Remote)

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: London

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

TONiC: quality of life in neurological conditions
Examining the factors influencing quality of life in neurological conditions.
Recruiting: People with MND
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
Location: London, Sheffield, Northern Lincolnshire and Goole, South Wales, Newcastle, Plymouth, Leicestershire, Middlesbrough and Preston (more sites to follow) (Remote)

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)

Coping And Living well with MND (CALM) study
Evaluating the usability, acceptability and engagement of the CALM (Coping And Living well with MND) website intervention.
Recruiting: People with MND  |  Family members
Location: UK-wide (Remote)

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)

Impact ALS: European ALS patient & caregiver survey
Online survey to gather information on disease burden, functional outcomes and treatment views to help guide the development of new drugs and services for ALS.
Recruiting: People with MND | Caregivers
Location: Across Europe (Remote)

Behind the mask: clinical communication in a time of COVID-19
Investigating how healthcare conversations have been affected by the need to stay apart, and by the need to wear Personal Protective Equipment (PPE)
Recruiting: People with MND | Carers | Healthy controls
Location: UK-wide (Remote)

Examining the impact of the COVID-19 pandemic on people with MND
Online survey to know how people with MND have been affected by the pandemic, and whether this has had any impact on their MND health and social care.
Recruiting: People with MND
Location: UK-wide (Remote)

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262