Condition: Progressive supranuclear palsy (PSP)
Progressive supranuclear palsy (PSP) is a rare and complex neurological condition that progressively affects functions such as movement, balance, vision, speech, and swallowing.[1] [2] [3]
Progressive supranuclear palsy gets its full name because it characteristically gets worse over time (progressive), it damages the parts of the brain that control eye movements (supranuclear), and it causes muscle weakness (palsy).[1] [2] [3]
PSP belongs to a category of disorders called Atypical Parkinsonian Disorders. It often gets misdiagnosed as Parkinson’s disease early on due to some overlapping symptoms like problems with balance, walking, coordination, and eye movements.[1]
Access a multitude of PSP-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.pspassociation.org.uk/information-and-support/what-is-psp/
[2] https://www.nhs.uk/conditions/progressive-supranuclear-palsy-psp/
[3] https://www.ninds.nih.gov/health-information/disorders/progressive-supranuclear-palsy-psp
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: Progressive Supranuclear Palsy. Recruitment status: Recruiting
Condition category: Progressive Supranuclear Palsy. Recruitment status: All Recruitment Statuses
https://www.isrctn.com/search?q=Progressive+Supranuclear+Palsy
EU Clinical Trials register
Click below to view the EU Clinical Trials registry for Progressive Supranuclear Palsy clinical trials:
https://www.clinicaltrialsregister.eu/ctr-search/search?query=Progressive+Supranuclear+Palsy
ClinicalTrials.gov (National Library of Medicine, US-based)
Click below to view the currently-recruiting Progressive Supranuclear Palsy clinical trials on ClinicalTrials.gov:
BPoR real-time counter for Progressive Supranuclear Palsy clinical trials
CurePSP - PSP Trial Platform (US-based)
View the details of the PSP Trial Platform as well as access the prescreening survey for participation:
Progressive Supranuclear Palsy Association (PSPA)
https://www.pspassociation.org.uk/research/research-projects/psp-cbd-clinical-trials/
Helpful BPoR webpages:
Homepage
https://bepartofresearch.nihr.ac.uk/
Progressive Supranuclear Palsy clinical trials (and research studies) that are currently recruiting
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 2,800 open-access (free to read and download) publications about Progresive Supranuclear Palsy:
Research participation
NHS Research Scotland
For information on the NHS Scotland Neuroprogressive and Dementia Network:
https://www.nhsresearchscotland.org.uk/research-areas/dementia-and-neurodegenerative-disease
Go direct to the Research Register sign-up form:
Be Part of Research - National Institute of Health and care Research (NIHR)
Progressive Supranuclear Palsy research studies (and clinical trials) that are currently recruiting:
Progressive Supranuclear Palsy Association (PSPA)
Click below to be directed to the PSPA Expression Of Interest In Research form:
https://pspassociation.tfaforms.net/f/Expression_of_Interest_Form
Click below to be directed to PSPA's list of relevant research projects that are not PSPA funded:
https://www.pspassociation.org.uk/research/research-projects/other-research-studies/
Sources of information
Cure PSP
https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy
Click below to access a variety of helpful resources about Progressive Supranuclear Palsy:
https://www.pspassociation.org.uk/information-and-support/just-been-diagnosed/pspa-publications/
PSPA (Progressive Supranuclear Palsy Association)
https://www.pspassociation.org.uk/information-and-support/what-is-psp/
Alzheimer's Research UK
Click below to view the ARUK information booklet on PSP:
https://www.alzheimersresearchuk.org/wp-content/uploads/2026/07/PSP.pdf
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/
Cure PSP
Sign up to receive the latest news and resources from the Cure PSP foundation:
PSPA (Progressive Supranuclear Palsy Association)
PSPA publish the "PSPA Matters" magazine four times a year which is circulated by email or post. The link below provides access to sign up and also to read previous editions, with audio options available too:
https://www.pspassociation.org.uk/information-and-support/just-been-diagnosed/pspa-matters/
Contact details, Socials and Helplines
Cure PSP
Contact via email:
Engage via socials:
YouTube
https://www.youtube.com/user/CurePSP
X
https://www.facebook.com/curepsp.foundation
https://www.instagram.com/curepsp_/
Flickr
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
PSPA
Contact via website:
https://www.pspassociation.org.uk/about-us/contact-us/
Contact via email:
For the PSPA helpline:
Telephone: 0300 0110 122
Email: helpline@pspassociation.org.uk
Contact PSPA support groups:
https://www.pspassociation.org.uk/information-and-support/your-pspa-support-networks/
Engage via socials:
PSPA online forum
https://healthunlocked.com/psp
YouTube
https://www.youtube.com/channel/UCGRa4ufS_i4eu6SGuB8Ni6Q?view_as=subscriber
https://www.linkedin.com/company/psp-association
X
https://www.twitter.com/PSPASSOCIATION
https://www.facebook.com/PSPAssociation/
https://www.instagram.com/teampspa
Flickr
Media
PSPA
PSPA online forum
https://healthunlocked.com/psp
YouTube
https://www.youtube.com/@pspacharity
https://www.linkedin.com/company/psp-association
X
https://www.twitter.com/PSPASSOCIATION
https://www.facebook.com/PSPAssociation/
https://www.instagram.com/teampspa
Flickr
Parkinson's and Movement Disorders Alliance (PMD Alliance)
Watch the "Understanding Progressive Supranuclear Palsy (PSP)" video provided by the PMD Alliance:
Union Chimique Belge (UCB)
Watch the "What is progressive supranuclear palsy (PSP)?" video provided by UCB:
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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