Condition: Creutzfeldt-Jakob disease (CJD) and prion conditions
Dementia is an 'umbrella' term used to describe the loss of memory and other cognitive abilities that are severe enough to impact every day life.
Dementia is comprised of many conditions, including:
Alzheimer's disease, Vascular dementia, Lewy body dementia and Frontotemporal dementia
Over 57 million people live with dementia worldwide,[1] and 1 million in the UK.[2] Dementia was the UK's leading cause of death in 2024.[3]
[1] https://www.who.int/news-room/fact-sheets/detail/dementia
[2] https://dementiastatistics.org/about-dementia/
[3] https://dementiastatistics.org/about-dementia/deaths/
Access a multitude of dementia-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)
Creutzfeldt-Jakob disease clinical trials (and research studies) that are currently recruiting
Prion-related clinical trials (and research studies) that are currently recruiting
https://bepartofresearch.nihr.ac.uk/results/search-results?query=prion&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).
Search term: "Creutzfeldt". Recruitment status: Recruiting
Search term: "prion". Recruitment status: Recruiting
https://www.isrctn.com/search?q=prion&filters=recruitmentStatus:recruiting&page=1&sort=&pageSize=10
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 3,000 open-access (free to read and download) publications about Creutzfeldt-Jakob disease:
https://pubmed.ncbi.nlm.nih.gov/?term=creutzfeldt-jakob+disease&filter=simsearch2.ffrft&sort=date
The PubMed database contains over 12,000 open-access (free to read and download) publications about prions:
https://pubmed.ncbi.nlm.nih.gov/?term=prion&filter=simsearch2.ffrft&sort=date
Research participation
Be Part of Research - National Institute of Health and care Research (NIHR)
Creutzfeldt-Jakob disease research studies (and clinical trials) that are currently recruiting
Prion-related research studies (and clinical trials) that are currently recruiting
https://bepartofresearch.nihr.ac.uk/results/search-results?query=prion&location=
Sources of information
CJDSN (Creutzfeldt-Jakob Disease Support Network)
Cure CJD
The University of Edinburgh
Newsletters
CJDSN (Creutzfeldt-Jakob Disease Support Network)
Click below to join the CJDSN mailing list:
https://cjdsupport.us20.list-manage.com/subscribe?u=278150f41e4478fb1c63d6be7&id=4bf55008d7
Cure CJD
Sign up to the Cure CJD mailing list:
https://curecjd.org/news-and-events/ (scroll to the bottom of the page)
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/
Contact details, Socials and Helplines
Dementias Platform UK
Contact via website:
https://www.dementiasplatform.uk/about-us/contact-us
Contact via email:
Engage via socials:
Bluesky
https://bsky.app/profile/dementiasplatform.bsky.social
X
Linked In
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
Cure CJD
Contact via website:
https://curecjd.org/contact-us/
Engage via socials:
https://www.linkedin.com/company/the-cure-cjd-campaign/
X
https://twitter.com/curecjdcampaign
https://www.facebook.com/curecjdcampaign/
CJDSN (Creutzfeldt-Jakob Disease Support Network)
Contact via website:
https://cjdsupport.co.uk/contact/
Contact via email:
Contact via telephone:
0800 774 7317
Contact via post:
PO Box, 3936. Chester, CH1 9NG
Engage via socials:
https://www.facebook.com/CJDSupport
YouTube
Media
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.