Clinical trials

Be Part of Research - National Institute of Health and care Research (NIHR)

Leukodystrophy clinical trials (and research studies) that are currently recruiting

https://bepartofresearch.nihr.ac.uk/results/search-results?query=leukodystrophy&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: Leukodystrophy. Recruitment status: Recruiting

https://www.isrctn.com/search?q=leukodystrophy&filters=recruitmentStatus:recruiting&page=1&sort=&pageSize=10

Condition category: Leukodystrophy. Recruitment status: All Recruitment Statuses

https://www.isrctn.com/search?q=leukodystrophy

United Leukodystrophy Foundation (ULF)

Leukodystrophy clinical trials around the world

https://ulf.org/research/clinical-trials/

EU Clinical Trials register

Click below to view the EU Clinical Trials registry for leukodystrophy clinical trials:

https://www.clinicaltrialsregister.eu/ctr-search/search?query=leukodystrophy

ClinicalTrials.gov (National Library of Medicine, US-based)

Click below to view the currently-recruiting leukodystrophy clinical trials on ClinicalTrials.gov:

https://clinicaltrials.gov/search?cond=Leukodystrophy&viewType=Card&aggFilters=status:rec

Alex TLC

https://alextlc.org/research-and-projects/research/current-research/

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 2,000 open-access (free to read and download) publications about leukodystrophy:

https://pubmed.ncbi.nlm.nih.gov/?term=leukodystrophy&filter=simsearch2.ffrft&sort=date

Research participation

Global Leukodystrophy Initiative (US-based locations)

https://glia-ctn.rarediseasesnetwork.org/research-studies

Be Part of Research - National Institute of Health and care Research (NIHR)

Leukodystrophy research studies (and clinical trials) that are currently recruiting

https://bepartofresearch.nihr.ac.uk/results/search-results?query=leukodystrophy&location=

NHS Research Scotland

Click below to be directed to the NHS Research Scotland Neuroprogressive and Dementia participant sign up form to show your interest in taking part in a research study.

https://www.nhsresearchscotland.org.uk/research-areas/dementia-and-neurodegenerative-disease/patient-signup-form

Alex TLC

https://alextlc.org/research-and-projects/research/current-research/

Sources of information

The Leeds Teaching Hospitals - NHS

Inherited White Matter disorders

https://www.leedsth.nhs.uk/patients/resources/inherited-white-matter-disorders/

The Brain Charity

https://www.thebraincharity.org.uk/condition/leukodystrophy/

Alex TLC (The Leukodystrophy Charity)

https://alextlc.org/leukodystrophy/what-is-leukodystrophy/

https://alextlc.org/leukodystrophy/a-z-of-leukodystrophy/

National Institute of Neurological Disorders and Stroke (NINDS)

https://www.ninds.nih.gov/health-information/disorders/leukodystrophy

Global Leukodystrophy Initiative

https://theglia.org/

European Leukodystrophy Association (ELA)

https://ela-asso.com/

Leukonet - Australian leukodystrophy clinical and research programme

See the link below to Leukonet which provides a variety of resources on a wide range of leukodystrophy conditions:

https://www.leukonet.org.au/support-and-resources/

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/

Alex TLC (The Leukodystrophy Charity)

Join the Alex TLC mailing list to receive monthly news round-ups, research summaries and charity updates.

https://alextlc.org/newsletter-sign-up/

Contact details, Socials and Helplines

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

LinkedIn

https://www.linkedin.com/company/the-brain-charity/

X

https://x.com/thebraincharity

Facebook

https://www.facebook.com/thebraincharity

Instagram

https://www.instagram.com/thebraincharity/

TikTok

https://www.tiktok.com/@thebraincharity

Alex TLC (The Leukodystrophy Charity)

Contact via website:

https://alextlc.org/contact-us/

Contact via email:

info@alextlc.org

Contact via telephone:

020 7701 4388

Contact via post:

Alex, The Leukodystrophy Charity, 45 Peckham High Street, London SE15 5EB

Engage via socials:

YouTube

https://www.youtube.com/@AlexTLC

LinkedIn

https://www.linkedin.com/company/alex-tlc/

Facebook

https://www.facebook.com/AlexTLCsupport/

Instagram

https://www.instagram.com/we_are_alex_tlc/

Media

Young Dementia Network webinars

https://www.youngdementianetwork.org/news-and-events/our-webinars/

Dementia UK

Advice videos

https://www.dementiauk.org/information-and-support/resources/advice-videos/

Personal stories

https://www.dementiauk.org/information-and-support/stories/

UCLA Health (University of California, Los Angeles)

Alzheimer's Caregiver Education Series - A free webinar series of 25 videos that provide help and guidance for anyone affected by dementia.

https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education/aces-webinars

Alzheimer's and dementia caregiver training videos

https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education/caregiver-training-videos

Alzheimer's & dementia care: Common challenges videos

https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education/common-challenges-videos

Monthly "Better caregiving for all" webinar series

https://www.uclahealth.org/medical-services/geriatrics/dementia/caregiver-education/better-caregiving-all

Dementias Platform

https://www.dementiasplatform.uk/news-and-media

Alzheimer's Association

"ALZ Talks" webinars

https://www.alz.org/help-support/resources/alz-talks-virtual-events

Free learning webinars

https://www.alz.org/help-support/resources/live-learning-webinars

Free online educational programmes and dementia care resources

https://www.alz.org/help-support/resources/care-education-resources

Spinal Muscular Atrophy UK (SMA UK)

Access WhatsApp groups, podcasts, videos and community experiences

https://smauk.org.uk/connect-with-the-community/

Davis Phinney Foundation (Foundation for Parkinson's). US-based.

Blog library

https://davisphinneyfoundation.org/blog/

Webinars

https://davisphinneyfoundation.org/webinars-and-meetups/

Podcasts

https://davisphinneyfoundation.org/podcasts/

BBC

BBC radio 4: Dementia: Unexpected Stories of the Mind

https://www.bbc.co.uk/programmes/m001kww0/episodes/player

BBC memory radio channel

https://www.bbc.co.uk/sounds/brand/p07mvnd1

BBC: Dementia And Me video series

https://www.bbc.co.uk/sounds/brand/p07fsqj9

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

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.