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]

[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/

Access a multitude of spinal muscular atrophy-relevant resources, categorised into the following sections:

  1. Clinical trials

  2. Research publications

  3. Research participation

  4. Sources of information

  5. Newsletters

  6. Contact details, Socials and Helplines

  7. Media

  8. Care home resources

  9. Support for carers

  10. Shops with assistive products/aids

  11. Inequalities in neurodegeneration

Clinical trials

Be Part of Research (BPoR) - National Institute of Health and care Research (NIHR)
Currently recruiting clinical trials (and research studies) for spinal muscular atrophy

https://bepartofresearch.nihr.ac.uk/results/search-results?query=Spinal%20muscular%20atrophy&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: Spinal muscular atrophy. Recruitment status: Recruiting

https://www.isrctn.com/search?q=spinal%20muscular%20atrophy&filters=recruitmentStatus:recruiting&page=1&sort=&pageSize=10

Condition category: Spinal muscular atrophy. Recruitment status: All Recruitment Statuses

https://www.isrctn.com/search?q=spinal+muscular+atrophy

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:

https://clinicaltrials.gov/search?cond=spinal%20muscular%20atrophy&viewType=Card&aggFilters=status:rec

Real-time counter for clinical trials into Spinal Muscular Atrophy (BPoR)

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

https://bepartofresearch.nihr.ac.uk/results/search-results?query=Spinal%20muscular%20atrophy&location=

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

https://smauk.org.uk/living-with-sma/

SMA News Today (Spinal Muscular Atrophy)
Homepage

https://smanewstoday.com/

NHS

https://www.nhs.uk/conditions/multiple-system-atrophy/

Newsletters

Spinal Muscular Atrophy UK (SMA UK)

https://smauk.org.uk/about/newsletter-sign-up/

SMA News Today (Spinal Muscular Atrophy)

https://smanewstoday.com/newsletter/

Muscular Dystrophy UK

https://www.musculardystrophyuk.org/professionals/hcp-newsletter/

Contact details, Socials and Helplines

SMA News Today
Contact via email:

info@bionews.com

Engage via socials:
YouTube

https://www.youtube.com/channel/UCzBWJ_JjfZ3oxds_ysnEebA

X

https://twitter.com/SMANewsToday

Facebook

https://www.facebook.com/SMAnewstoday

Instagram

https://www.instagram.com/smanewstoday/

Pinterest

https://www.pinterest.pt/smanewstoday/

Threads

https://www.threads.com/@smanewstoday

SoundCloud

https://soundcloud.com/sma-news-today

Spinal Muscular Atrophy UK (SMA UK)
Contact via website:

https://smauk.org.uk/contact/

Contact via email:

office@smauk.org.uk

Contact via telephone:

01789 267520

Engage via socials:
YouTube

https://www.youtube.com/c/SpinalMuscularAtrophyUK

LinkedIn

https://www.linkedin.com/company/sma-uk/

X

https://x.com/SMA_UK_

Facebook

https://www.facebook.com/SpinalMuscularAtrophyUK/

Instagram

https://www.instagram.com/SMA_UK/

Muscular Dystrophy UK
Contact via website:

https://www.musculardystrophyuk.org/about-us/contact-us/

Contact via email:

info@musculardystrophyuk.org

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

LinkedIn

https://www.linkedin.com/company/musculardystrophyuk/

Facebook

https://www.facebook.com/musculardystrophyUK/

Instagram

https://www.instagram.com/musculardystrophyuk/?hl=en

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

Instagram

https://www.instagram.com/musculardystrophyuk/?hl=en

Facebook

https://www.facebook.com/musculardystrophyUK/

LinkedIn

https://www.linkedin.com/company/musculardystrophyuk/

Care home resources

Lottie

https://lottie.org/

Care Quality Commission (CQC) – Find a care home

https://www.cqc.org.uk/care-services/find-care-home

BUPA

https://www.bupa.co.uk/care-services/care-homes/find-a-care-home

Care UK

https://www.careuk.com/care-homes

Support for carers

Citizens Advice

https://www.citizensadvice.org.uk/

Citizens Advice: 0800 144 8848

Carers Direct

https://www.carersdirect.org/

Carers Direct helpline: 0300 123 1053

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)

https://www.caringtogether.org/

Carers Trust

https://carers.org/help-for-carers/introduction

Carers Network

https://www.carers-network.org.uk/

info@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

enquiries@healthwatch.co.uk

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.

https://www.alzscot.org/community-support/carer-support/

Shops with assistive products/aids

Parkinson's UK
Everyday living aids

https://shop.parkinsons.org.uk/collections/everyday-living-aids-2

AlzProducts.co.uk

https://www.alzproducts.co.uk/?

Relish
Dementia products

https://relish-life.com/collections/all?

DementiaCareProducts

https://www.dementiacareproducts.co.uk/

Millercare

https://www.millercare.co.uk/collections/dementia-products?

TabTime
TabTime produces products to help keep track of when it's time to take medications.

https://tabtime.com/collections/products-for-parkinsons

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

https://www.ohe.org/publications/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?

https://www.alz.org/blog/2019/how-do-diversity-and-stress-play-a-role-in-alzheimer-s-risk-a-young-researcher-is-searching-for-ans

UK Health Security Agency (gov.uk)
Read the blog: "Health Matters: Health inequalities and dementia"

https://ukhsa.blog.gov.uk/2016/03/22/health-matters-health-inequalities-and-dementia/#:~:text=itself%20for%20dementia.-,Ethnicity,Socio%2Deconomic%20gradients%20in%20risks

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

https://www.alzheimersresearchuk.org/news/levelling-the-playing-field-why-inclusivity-matters-in-dementia-research/

The Impact of dementia on women - Article

https://www.alzheimersresearchuk.org/about-us/our-influence/policy-work/reports/the-impact-of-dementia-on-women/?

The Impact of dementia on women - Download the report

https://www.alzheimersresearchuk.org/wp-content/uploads/2022/05/The-Impact-of-Dementia-on-Women-ARUK-report.pdf?

YouTube video - Tackling Inequalities in a Diverse Dementia Population, ARUK Clinical Conference 2022

https://www.youtube.com/watch?v=bqJRzEbUQz4

Institute of Health Equity
Download the Inequalities report

https://www.instituteofhealthequity.org/resources-reports/inequalities-in-mental-health-cognitive-impairment-and-dementia-among-older-people/inequalities-in-mental-health-cognitive-impairement-and-dementia-among-older-people.pdf

Care Quality Commission
Access the CQC report on dementia inequalities

https://www.cqc.org.uk/about-us/transparency/external-reports-research/rapid-literature-review-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

https://raceequalityfoundation.org.uk/health-and-care/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

https://raceequalityfoundation.org.uk/our-partnerships/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

https://raceequalityfoundation.org.uk/uncategorised/how-the-nhs-can-break-the-30-year-cycle-and-use-ethnicity-data-to-tackle-health-inequalities-today-2/

Race Equality Foundation: "Dementia" search

https://raceequalityfoundation.org.uk/?s=dementia&post_type%5B%5D=post&post_type%5B%5D=page&search_limit_to_post_titles=1&add_woo_product_skus=0&fs=1

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The resources detailed within the Neural Network have been curated for their credibility, clarity and utility.

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