Condition:
Motor neuron disease
Motor neuron disease (MND) is a group of rare, progressive neurological condition that damages motor nerves in the brain and spinal cord. This group of conditions affect around 8,000 people in the UK. It can also be found spelt "motor neurone disease", and the most common form of MND is Amyotrophic Lateral Sclerosis (ALS).
Access a multitude of Motor neuron disease-relevant resources, categorised into the following sections:
Clinical trials
Research publications
Research participation
Sources of information
Newsletters
Contact details, Socials and Helplines
Media
Care home resources
Support for carers
Shops with assistive products/aids
Inequalities in neurodegeneration
Clinical trials
Be Part of Research - National Institute of Health and care Research (NIHR)
Currently recruiting clinical trials (and research studies): search term = "Motor neurone disease"
https://bepartofresearch.nihr.ac.uk/results/search-results?query=Motor%20neurone%20disease&location=
Currently recruiting clinical trials (and research studies): search term = "Motor neuron disease"
https://bepartofresearch.nihr.ac.uk/results/search-results?query=Motor%20neuron%20disease&location=
ISRCTN - The UK's Clinical Study Registry
The ISRCTN registry is a primary clinical study registry recognised by the World Health Organisation (WHO) and the International Committee of Medical Journal Editors (ICMJE).
Condition category: Motor neuron disease. Recruitment status: Recruiting
Condition category: Motor neuron disease. Recruitment status: All Recruitment Statuses
Research publications
PubMed (National Library of Medicine)
PubMed is a free resource supporting the search and retrieval of biomedical and life sciences literature with the aim of improving health–both globally and personally.
The PubMed database contains over 4,000 open-access (free to read and download) publications about motor neuron disease:
https://pubmed.ncbi.nlm.nih.gov/?term=motor+neuron&filter=simsearch2.ffrft&sort=date
Research participation
Be Part of Research - National Institute of Health and care Research (NIHR)
Currently recruiting research studies (and clinical trials): search term = "Motor neurone disease"
https://bepartofresearch.nihr.ac.uk/results/search-results?query=Motor%20neurone%20disease&location=
Currently recruiting research studies (and clinical trials): search term = "Motor neuron disease"
https://bepartofresearch.nihr.ac.uk/results/search-results?query=Motor%20neuron%20disease&location=
Sources of information
Brain & Spine Foundation
https://www.brainandspine.org.uk/health-information/fact-sheets/motor-neurone-disease/
MND Scotland
ALS Association
MND Association
My Name'5 Doddie Foundation
Newsletters
UKDRI
The general e-newsletter 'Inside Eye on UKDRI'
https://ukdri.us16.list-manage.com/subscribe?u=89dd070bf85e6c044d4a0a1e1&id=e5bddd4107
The quarterly e-newsletter focused on translational news at the Institute
https://ukdri.us16.list-manage.com/subscribe?u=89dd070bf85e6c044d4a0a1e1&id=311ab484b9
The Brain Charity
Sign up to receive The Brain Charity's newsletter to get regular updates on the work they do, the latest news, fundraising challenges and real life stories.
https://www.thebraincharity.org.uk/press-media/our-newsletter/
Brain Research UK
Sign up to the BRUK e-newsletter to keep up-to-date with their work and receive useful insights.
ALS Association
Receive updates from the ALS Association by signing up to their email newsletter:
UK MN DRI
Receive updates by signing up to the UK MN DRI email newsletter:
MND Scotland
Using the link below allows you to view recent MND Scotland newsletters and also sign up to receive new ones (sign-up is at the bottom of the page):
My Name'5 Doddie Foundation
Using the link and scroll to the bottom of the page to join the newsletter (sign-up is at the bottom of the page):
Contact details, Socials and Helplines
UK MN DRI
Contact via website:
https://ukmndri.org/get-in-touch/
Contact via telephone
020 7404 9982
Contact via post
Brain Research UK
Fifth Floor
Holborn Gate
330 High Holborn
London WC1V 7QH
Engage via socials:
X
https://www.linkedin.com/company/uk-mnd-research-institute-ukmndri/
MND Association
Contact via email:
Contact via telephone:
01604 250505
Contact via website:
https://www.mndassociation.org/about-us/contact-us
Contact via post:
Motor Neurone Disease Association
Francis Crick House
6 Summerhouse Road
Moulton Park
Northampton
NN3 6BJ
Contact MND Connect Helpline:
Information on the MND Connect Helpline: https://www.mndassociation.org/support-and-information/our-services/mnd-connect
By email: mndconnect@mndassociation.org
By telephone: 0808 802 6262
Engage via socials:
Youtube
https://www.youtube.com/mndassociationofficial
https://www.facebook.com/mndassociation/
X
UK Dementia Research Institute (UKDRI)
Contact via website:
https://www.ukdri.ac.uk/our-story/about-us/contact
Contact via email:
Contact via telephone:
+442046 027013.
Engage via socials:
YouTube
https://www.youtube.com/@ukdementiaresearchinstitute
Bluesky
https://bsky.app/profile/ukdri.ac.uk
X
The Brain Charity
Contact via website:
https://www.thebraincharity.org.uk/about-the-brain-charity/contact-us/
Engage via socials:
YouTube
https://www.youtube.com/channel/UCwKcEs-Dch--JIPh870_TsA
https://www.linkedin.com/company/the-brain-charity/
X
https://www.facebook.com/thebraincharity
https://www.instagram.com/thebraincharity/
TikTok
ALS Association
Engage via socials:
Youtube
https://www.youtube.com/user/thealsassociation
https://www.facebook.com/alsassociation
X
https://www.instagram.com/als/?hl=en
TikTok
https://www.tiktok.com/@thealsassociation
https://www.linkedin.com/company/the-als-association/
Brain Research UK
Contact via email:
Contact via telephone
020 7404 9982
Contact via post
Brain Research UK
Fifth Floor
Holborn Gate
330 High Holborn
London WC1V 7QH
Engage via socials:
Youtube
https://www.youtube.com/channel/UCFlrp6Gm7SGNBzCWq20CRWQ
https://www.facebook.com/BRUKresearch/
X
https://www.instagram.com/brainresearchuk
MND Scotland
Contact via website:
https://mndscotland.org.uk/contact-us/
Contact via email:
Contact via telephone
0141 332 3903
Contact via post
6th Floor, Merchant Exchange, 20 Bell Street, Glasgow, G1 1LG
Engage via socials:
YouTube
https://www.youtube.com/c/MndscotlandOrgUk
https://www.facebook.com/mndscotland
X
https://twitter.com/MNDScotland
https://www.instagram.com/mndscotland
https://www.linkedin.com/company/mnd-scotland/
TikTok
https://www.tiktok.com/@mndscotland
Threads
My Name'5 Doddie Foundation
Contact via website:
https://www.myname5doddie.co.uk/contact-us/
Contact via email:
Contact via post
Thorn House, 5 Rose Street, Edinburgh, EH2 2PR
Engage via socials:
https://www.facebook.com/MNDoddie5/
X
https://www.instagram.com/myname5doddie/?hl=en
https://www.linkedin.com/company/my-name-5-doddie-foundation/
Bluesky
Media
MND Scotland
The MND Scotland News page, including access to blogs, MND stories, campaigns, research and more.
https://mndscotland.org.uk/news/
YouTube
https://www.youtube.com/c/MndscotlandOrgUk
https://www.instagram.com/mndscotland
TikTok
https://www.tiktok.com/@mndscotland
Threads
https://www.threads.com/@mndscotland
https://www.facebook.com/mndscotland
X
https://twitter.com/MNDScotland
MND Association
MND Matters: the MND Association podcast
https://www.mndassociation.org/media/mnd-matters
Thumbprint - The MND Membership magazine
https://www.mndassociation.org/media/thumb-print
Youtube
https://www.youtube.com/mndassociationofficial
https://www.instagram.com/mndassoc/
https://www.facebook.com/mndassociation/
X
ALS Association
Blog
Press releases
https://www.als.org/stories-news?f%5B0%5D=news_article_type%3A13
Youtube
https://www.youtube.com/user/thealsassociation
https://www.instagram.com/als/?hl=en
TikTok
https://www.tiktok.com/@thealsassociation
https://www.linkedin.com/company/the-als-association/
https://www.facebook.com/alsassociation
X
My Name'5 Doddie Foundation
Read research updates, news and stories from the MND community.
https://www.myname5doddie.co.uk/news-and-stories/
https://www.instagram.com/myname5doddie/?hl=en
https://www.facebook.com/MNDoddie5/
X
https://www.linkedin.com/company/my-name-5-doddie-foundation/
Bluesky
Care home resources
Lottie
Care Quality Commission (CQC) – Find a care home
Support for carers
Receive an NHS Carers Assessment (NHS)
An NHS carers assessment may lead to a Care And Support Plan and/or financial support from your council. To receive financial support the council may need to conduct a financial assessment.
https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/benefits-for-carers/
Age UK
https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/
Contact Age UK: 0800 678 1602
Carers UK
https://www.carersuk.org/help-and-advice/
Carers UK helpline: 0808 808 7777
Online forum: https://forum.carersuk.org/
Carers Credit - gov.uk
https://www.gov.uk/carers-credit
Or call the Carers Allowance unit: 0800 731 0297
Caring Together charity (Cambridgeshire, Peterborough and Norfolk)
Carers Trust
Carers Network
https://www.carers-network.org.uk/
Tel no: 020 8960 3033. Lines open Mon-Fri, 09.00-17.00 (except Bank holidays)
Healthwatch
https://www.healthwatch.co.uk/advice-and-information/search?combine=&field_themes_target_id%5B%5D=18
Tel no: 03000 683 000. Lines open 08.30-17.30, Mon-Fri.
The Lewy Body Society
Tips for carers and details on the Admiral Nurse Dementia helpline
https://www.lewybody.org/information-and-support/support-for-carers/
Alzheimer Scotland
Information, support and a helpline telephone number for carers.
Shops with assistive products/aids
AlzProducts.co.uk
DementiaCareProducts
TabTime
TabTime produces products to help keep track of when it's time to take medications.
Independence Ltd.
Independence Ltd. is a family-run business that has a catalogue of helpful living aids to assist in staying safe and independent.
Store homepage
https://www.independence.ltd.uk/
Neurodegeneration-directed products
https://www.independence.ltd.uk/helpful-ideas/useful-products-for-parkinsons/
Facebook page
https://www.facebook.com/people/Independence-Ltd/61566331302484/?locale=en_GB
Inequalities in neurodegeneration
Office of Health Economics
Article - Inequalities in dementia
Alzheimer’s Association
LGBTQ+ Community Resources for Dementia
https://www.alz.org/help-support/resources/alzheimers-and-dementia-resources-for-lgbtq-commun
Veterans and dementia
https://www.alz.org/help-support/resources/veterans-dementia
Native Americans and Alzheimer's
https://www.alz.org/help-support/resources/native-americans
Hispanic Americans and Alzheimer's
https://www.alz.org/help-support/resources/hispanics-and-alzheimers
Black Americans and Alzheimer's
https://www.alz.org/help-support/resources/black-americans-and-alzheimers
Asian Americans and Pacific Islanders and Alzheimer's
https://www.alz.org/help-support/resources/asian-americans-and-alzheimers
Strengthening Diversity, Equity and Inclusion
https://www.alz.org/about/annual-report/strengthening-diversity-equity-and-inclusion
Article: How Do Diversity and Stress Play A Role in Alzheimer’s Risk?
UK Health Security Agency (gov.uk)
Read the blog: "Health Matters: Health inequalities and dementia"
Alzheimer’s Research UK
Dementia and diversity statistics
https://dementiastatistics.org/perceptions-and-inequalities/inequalities/
Equity, Diversity and Inclusion
https://www.alzheimersresearchuk.org/about-us/how-we-do-it/equity-diversity-and-inclusion/
Article: Why inclusivity matters in dementia research
The Impact of dementia on women - Article
The Impact of dementia on women - Download the report
YouTube video - Tackling Inequalities in a Diverse Dementia Population, ARUK Clinical Conference 2022
Institute of Health Equity
Download the Inequalities report
Care Quality Commission
Access the CQC report on dementia inequalities
London School of Economics, Care Policy and Evaluation Centre
Read the May 2024 Dementia and Inequality report
https://www.lse.ac.uk/cpec/assets/documents/CPEC-briefing-1-Dementia-and-inequality.pdf
House of Commons Library
Research briefing May 2024: Inequalities in dementia services
https://researchbriefings.files.parliament.uk/documents/CDP-2024-0098/CDP-2024-0098.pdf
Race Equality Foundation
Dementia and BAME communities
https://raceequalityfoundation.org.uk/projects/dementia-and-bame-communities/
Dementia and Black and minority ethnic communities: resources
BAME people living with Dementia
https://raceequalityfoundation.org.uk/projects/bame-people-living-with-dementia/
Blog: Better support for BAME people living with Dementia
https://raceequalityfoundation.org.uk/blog/better-support-for-bame-people-living-with-dementia/
The EMPOWER Dementia Network: Empowering a Meaningful Life for All
How the NHS Can Break the ‘30-Year Cycle’ and Use Ethnicity Data to Tackle Health Inequalities Today, Dec 2025
Race Equality Foundation: "Dementia" search
Our vision
Neural Network aims to make it easy for anyone to access high-quality information on neurodegenerative conditions.
To achieve this it provides a framework for accessing an ever-growing library of resources, information and support, all from one central online location.
The resources detailed within the Neural Network have been curated for their credibility, clarity and utility.
Disclaimer
Neural Network does not provide medical advice. The resources it facilitates access to are for reference, research and educational purposes only, and they are not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek advice from a qualified healthcare professional about any medical concern, and do not disregard professional medical advice because of anything you may access on the Neural Network.
Unless otherwise explicitly stated, Neural Network takes no credit or responsibility for the research or information shown; please refer to the original authors for attribution.
Get in Touch
A critical aim of the Neural Network is to provide an easily-accessible source of information on ongoing Clinical Trials that members of the public may not be aware of. I'm passionate about keeping the information here useful and relevant and so if you have feedback, discover a linked webpage has been removed before I do, or are running clinical trials and would like to collaborate then please feel free to either email at: contact@neuralnetwork.org or complete the adjacent form.