Condition:
Multiple system atrophy
(MSA)
Multiple system atrophy (MSA) is a rare and progressive condition that is caused by the shrinking of nerve cells in multiple areas of the brain. It can result in problems with conscious functions (e.g. movement and balance) as well as unconscious functions (e.g. bladder and blood pressure control).[1] [2]
It is estimated that around 3,500 people are living with MSA in the UK and Ireland.[2]
MSA is an example of a synucleinopathy (a group of progressive neurodegenerative disorders characterised by the abnormal accumulation of misfolded α-synuclein proteins in the brain.) Other major synucleinopathies are Parkinson's disease (PD) and Lewy body dementia (LBD), with some MSA symptoms and characteristics being common between these conditions.[3] For this reason some resources for PD and LBD have also been included, as they may also be helpful to anyone affected by MSA.
[1] https://www.nhs.uk/conditions/multiple-system-atrophy/
[2] https://www.msatrust.org.uk/support/what-is-msa/frequently-asked-questions/
[3] https://cndlifesciences.com/about-synucleinopathies/
Access a multitude of MSA-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)
Multiple systems atrophy clinical trials (and research studies) that are currently recruiting
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: "Multiple system atrophy". Recruitment status: Recruiting
Condition category: "Multiple system atrophy". Recruitment status: All Recruitment Statuses
https://www.isrctn.com/search?q=%22multiple+system+atrophy%22
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 multiple system atrophy:
https://pubmed.ncbi.nlm.nih.gov/?term=multiple+system+atrophy&filter=simsearch2.ffrft&sort=date
Research participation
Be Part of Research - National Institute of Health and care Research (NIHR)
Multiple systems atrophy research studies (and clinical trials) that are currently recruiting
MSA Trust (Multiple System Atrophy Trust)
https://www.msatrust.org.uk/cause-and-cure/get-involved-in-research/open-msa-studies/
Sources of information
The Brain Charity
See the link below for information from The Brain Charity on multiple system atrophy:
https://www.thebraincharity.org.uk/condition/multiple-system-atrophy/
The link below for information on posterior cortical atrophy may also be of interest:
https://www.thebraincharity.org.uk/condition/posterior-cortical-atrophy/
MSA Trust (Multiple System Atrophy Trust)
View the MSA Trust fact sheets for useful information regarding the condition:
https://www.msatrust.org.uk/support/living-with-msa/factsheets/
Click below to view the MSA Trust information resources which are aimed to support people living with MSA, their carers and families, and health and care professionals:
National Institute of Neurological Disorders and Stroke (NINDS)
The link below directs to information from the NINDS on multiple system atrophy:
https://www.ninds.nih.gov/health-information/disorders/multiple-system-atrophy
Newsletters
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/
MSA Trust
Sign up to receive the free MSA Trust information and support services, which includes their free magazine "MSA News" which is published three time per year:
https://www.msatrust.org.uk/support/join-us/
Access previous issues of the MSA News magazine, which can be read online or downloaded:
https://www.msatrust.org.uk/support/support-services/msa-news-magazine/
MSA is an example of a synucleinopathy (a group of progressive neurodegenerative disorders characterised by the abnormal accumulation of misfolded α-synuclein proteins in the brain.) Other major synucleinopathies are Parkinson's disease and Lewy body dementia, with some MSA symptoms being shared with these conditions. The below resources may therefore be helpful to anyone affected by MSA.
Parkinson's UK
Parkinson's UK online magazine articles
https://www.parkinsons.org.uk/magazine
Cure Parkinson's
Cure InSight newsletter
https://cureparkinsons.org.uk/about-us/cure-insight/
The Lewy Body Society
Sign up to be kept up-to-date with the latest news and updates from the Lewy Body Society.
https://www.lewybody.org/new-email-newsletter-sign-up-now/
The Michael J. Fox Foundation For Parkinson's Research
The Michael J. Fox online newsletter
Contact details, Socials and Helplines
Parkinson's UK
Email: hello@parkinsons.org.uk
Tel: 0808 800 0303. Mon-Fri 09.00-18.00, Sat 10.00-13.00.
https://www.facebook.com/parkinsonsuk/
Youtube
https://www.youtube.com/parkinsonsUK
https://www.instagram.com/parkinsonsuk/?hl=en
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
MSA Trust
Contact via website:
https://www.msatrust.org.uk/contact-us/
Contact via email:
Contact via telephone:
0333 323 4591 (Monday – Thursday: 9.00am – 5.00pm, Friday: 9.00am – 4.00pm)
Contact via post:
Multiple System Atrophy Trust
128B Business Design Centre
52 Upper Street
London
N1 0QH
Engage via socials:
https://www.linkedin.com/company/multiple-system-atrophy-trust
X
https://www.facebook.com/MSATrust1/
Cure Parkinson's
Contact via email:
Contact via telephone:
0207 487 3892
Contact via post:
120 New Cavendish Street, London, W1W 6XX
Engage via socials:
Youtube
https://www.youtube.com/channel/UC22BEygQpXo9wbb6qMZPjtQ
https://www.instagram.com/cureparkinsons/
https://www.facebook.com/cureparkinsons/
X
https://twitter.com/CureParkinsonsT
https://www.linkedin.com/company/the-cure-parkinson's-trust
Threads
https://www.threads.net/@cureparkinsons
Bluesky
The Lewy Body Society
Contact via email:
Contact via telephone:
01942 914000
Engage via socials:
Youtube
https://www.youtube.com/channel/UC2cHAD_mF6rCX8bA8pnoSdw
https://www.instagram.com/lewybodysociety/?hl=en
https://www.facebook.com/lewybodysociety/
https://www.linkedin.com/company/the-lewy-body-society/about/
Bluesky
The Michael J. Fox Foundation For Parkinson's Research (US-based)
Contact via email:
Engage via socials:
Youtube
https://www.youtube.com/channel/UCEwLnD6-KxGvKqnohdQ8lCw
https://www.instagram.com/michaeljfoxorg/
https://www.facebook.com/michaeljfoxfoundation
X
https://twitter.com/MichaelJFoxOrg
Media
Davis Phinney Foundation (Foundation for Parkinson's). US-based.
Blog library
https://davisphinneyfoundation.org/blog/
Webinars
https://davisphinneyfoundation.org/webinars-and-meetups/
Podcasts
MSA Trust
Access webinars produced by the MSA Trust:
https://www.msatrust.org.uk/support/information-resources/webinars/
MSA News magazine
https://www.msatrust.org.uk/support/support-services/msa-news-magazine/
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
MSA Trust
Find or list second hand equipment through the MSA Trust
https://www.msatrust.org.uk/support/support-services/second-hand-equipment/
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
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Neural Network aims to make it easy for anyone to access high-quality information on neurodegenerative conditions.
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