Condition:
Spinal muscular atrophy (SMA)
Spinal muscular atrophy (SMA) is a rare neuromuscular condition that affects the central nervous system, peripheral nervous system, and voluntary muscle movement.[1], [2]
Access a multitude of spinal muscular atrophy-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
[1] https://www.mda.org/disease/spinal-muscular-atrophy
[2] https://smauk.org.uk/support-information/about-sma/spinal-muscular-atrophy-sma-a-brief-summary/
Clinical trials
Be Part of Research (BPoR) - National Institute of Health and care Research (NIHR)
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: Spinal muscular atrophy. Recruitment status: Recruiting
Condition category: Spinal muscular atrophy. Recruitment status: All Recruitment Statuses
EU Clinical Trials register
Click below to view the EU Clinical Trials registry for spinal muscular atrophy clinical trials:
https://www.clinicaltrialsregister.eu/ctr-search/search?query=spinal+muscular+atrophy
ClinicalTrials.gov (National Library of Medicine, US-based)
Click below to view the currently-recruiting spinal muscular atrophy clinical trials on ClinicalTrials.gov:
BPoR real-time counter for spinal muscular atrophy clinical trials
Helpful BPoR webpages:
Homepage
https://bepartofresearch.nihr.ac.uk/
Currently recruiting clinical trials (and research studies) for spinal muscular atrophy
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 5,500 open-access (free to read and download) publications about spinal muscular atrophy:
https://pubmed.ncbi.nlm.nih.gov/?term=spinal+muscular+atrophy&filter=simsearch2.ffrft&sort=date
For any other query, you can click the link above and use the search bar to scour the vast PubMed library for literature that's relevant to you.
Research participation
Be Part of Research - National Institute of Health and care Research (NIHR)
Currently recruiting research studies (and clinical trials) for spinal muscular atrophy
Sources of information
Muscular Dystrophy UK
https://www.musculardystrophyuk.org/conditions/a-z/spinal-muscular-atrophy-sma/
Spinal Muscular Atrophy UK (SMA UK)
Support and information resources
https://smauk.org.uk/support-information/
Treatments and research
https://smauk.org.uk/treatments-research/
Living with SMA
Newsletters
Spinal Muscular Atrophy UK (SMA UK)
SMA News Today (Spinal Muscular Atrophy)
Muscular Dystrophy UK
https://www.musculardystrophyuk.org/professionals/hcp-newsletter/
Contact details, Socials and Helplines
SMA News Today
Contact via email:
Engage via socials:
YouTube
https://www.youtube.com/channel/UCzBWJ_JjfZ3oxds_ysnEebA
X
https://twitter.com/SMANewsToday
https://www.facebook.com/SMAnewstoday
https://www.instagram.com/smanewstoday/
https://www.pinterest.pt/smanewstoday/
Threads
https://www.threads.com/@smanewstoday
SoundCloud
Spinal Muscular Atrophy UK (SMA UK)
Contact via website:
Contact via email:
Contact via telephone:
01789 267520
Engage via socials:
YouTube
https://www.youtube.com/c/SpinalMuscularAtrophyUK
https://www.linkedin.com/company/sma-uk/
X
https://www.facebook.com/SpinalMuscularAtrophyUK/
Muscular Dystrophy UK
Contact via website:
https://www.musculardystrophyuk.org/about-us/contact-us/
Contact via email:
Contact via the free MDUK helpline:
0800 652 6352
Contact via post:
Muscular Dystrophy UK, 32 Ufford Street, London, SE1 8QD
Engage via socials:
YouTube
https://www.youtube.com/channel/UCfKwJqJwCJuf-RlVeQREPAw
https://www.linkedin.com/company/musculardystrophyuk/
https://www.facebook.com/musculardystrophyUK/
Media
SMA News Today
SMA News Today community forum
https://smanewstoday.com/forums/
Perspective columns
https://smanewstoday.com/category/columns/
Guest voices
https://smanewstoday.com/category/guest-voices/
Video blogs
https://smanewstoday.com/video-blogs/
Community videos series
Series - Building your healthcare team: https://smanewstoday.com/squad-goals-building-your-sma-healthcare-team/
Series - Taking control of your healthcare: https://smanewstoday.com/video-series-taking-control-your-sma-healthcare/
Series - SMA love story: https://smanewstoday.com/video/lexi-and-erics-sma-love-story-figuring-it-out-as-they-go/
Series - Smart home technology: https://smanewstoday.com/video/tylers-sma-setup-technology-hacks-find-home-independence/
Series - Final SMA gift: https://smanewstoday.com/video/sharing-sma-advocates-end-of-life-discussions-1-last-gift/
Series - Accessibility to maps: https://smanewstoday.com/video/accessibility-maps-tips-visiting-theme-parks-sma/
Spinal Muscular Atrophy UK (SMA UK)
Access WhatsApp groups, podcasts, videos and community experiences
https://smauk.org.uk/connect-with-the-community/
Community podcasts and videos
Living with SMA podcast
https://www.youtube.com/playlist?list=PLzmaepxl1ZGebwZxIeUeJjJsyX4EUhnhZ
Treatment & Care Webinars with Experts
https://smauk.org.uk/support-information/treatment-care-webinars-with-experts-2/
SMA UK & the SMA Community - Stories, interviews, events, awareness campaigns, community highlights, and important conversations from people living with SMA
https://www.youtube.com/playlist?list=PLzmaepxl1ZGcC_wUEpFfP6Jlmbbbn8WCO
Community Voices - Read, watch and listen to a range of experiences and thoughts from members of the SMA Community.
https://smauk.org.uk/connect-with-the-community/community-voices/
Muscular Dystrophy UK
Community stories
https://www.musculardystrophyuk.org/about-us/stories/
YouTube
https://www.youtube.com/channel/UCfKwJqJwCJuf-RlVeQREPAw
https://www.instagram.com/musculardystrophyuk/?hl=en
https://www.facebook.com/musculardystrophyUK/
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
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.
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