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Research projects – Not PSPA Funded

There are many PSP & CBD research studies taking place across the UK.


Researchers are keen to engage patients in their work and listen to the people living with the conditions.  It can be very rewarding taking part in research and often offers the opportunity for patients to learn more about their conditions too. The research could lead to new diagnostic tests, treatments and/or improvements in daily living care and support.

By working closely together we can make a difference. If you would like to take part in research then please review the list of projects below and reach out to one of the researchers for more information.

If you would like to register your interest in taking part in future research studies, please complete our online form. Researchers often need healthy participants (controls) for their projects, so you do not need to be living with PSP or CBD to register.


Invicro clinical research looking into the mechanisms of PSP disease (PSP only; London)

Location: Hammersmith Hospital, London (travel and refreshment provided and £300 for participation)

Invicro clinical research based at Hammersmith Hospital in London are undertaking a study for a research company Sitilop looking into the mechanisms of PSP disease and to suggest potential novel targets to slow or stop the progression of the disease.
The research will use Positron Emission Tomography (PET) and Magnetic Resonance Imaging (MRI), to explore how the brain works and measure the accumulation of proteins which are potentially toxic to the brain nerve cells in PSP. Each scan will last about 90 minutes. Researchers will perform a complete clinical and neuropsychological evaluation, plus the participants will be asked to provide a blood sample for routine tests. The study consists of two sets of visits. For the first four participants these visits will last up to three months, while for the rest of them, these visits will last up to 15 months.

Key requirements to participate:

  • Diagnosis of PSP and able to consent
  • Aged 50 to 90 years old
  • Willing and able to attend the research centre

Contact:

Dr Edoardo De Natale
edoardo.de_natale@sitilop.com


OxQUIP – Oxford study in Quantification in Parkinsonism (PSP only; Oxford)

Location: John Radcliffe Hospital, Oxford (travel expenses will be reimbursed)

This study aims to develop new ways of measuring PSP symptoms as precisely as possible so that when new drugs are ready to test, their effectiveness can be accurately assessed. During the study you would be asked to perform some simple tasks while the researchers measure the movements of your eyes, hands and body. You would also be asked to do some tasks on a tablet computer. Testing sessions in Oxford would take around an hour and a half to two hours and take place once every three months over 2 years if possible.

Key requirements to participate:

• Diagnosis of PSP and able to consent

Contact:

Dr Chrystalina Antoniades
01865 234728


NeuroCare app co-design project for care staff and people with long term neuro conditions (PSP & CBD; Home or Care environments)

Location: University of Sheffield but participation via two online workshops in late October 2020 and Spring 2021.

This is a project aimed at creating a digital learning tool for care staff and families to better support people with long term neurological conditions.  The learning tool is intended to be an easy to access, ‘on the go’, app which can be used via a smart phone or tablet.

The researchers are seeking to engage with people living with long term neurological conditions and the care staff who support them, to begin the app co-design phase this autumn. Neurocare KnowHow is primarily aimed at personal assistants, domiciliary care staff and care home staff who can find themselves looking after new people with neurological conditions, but who may feel anxious or uncertain about what to do. Some of the content will also be available for the family and friends of people with neurological conditions, to help them as a condition progresses with the changes this brings.

Key requirements to participate:

• Diagnosis of PSP or CBD and able to consent

  • Care professional

Contact

Becky (Technology Lead) Mobile : 07966 913 562

Emma (Content Lead) Mobile: 07905 896 786

Email: info@neurocareknowhow.co.uk


Research into Progressive Supranuclear Palsy (PSP) and Corticobasal Syndrome (CBS) in Cambridge

Location: Cambridge; can be completed at home if necessary.

Professor James Rowe and his team in Cambridge have a major new research study on PSP and CBS. He aims to understand the causes, symptoms, and variability from person to person, and work towards better diagnostic tests and treatment. The research includes test of memory and thinking, blood tests, and brain scans. Some of the research can be done at home, and we can fit the research to suit your individual ability and wishes.

We are also looking for healthy volunteers to help in the research.

Key requirements to participate:

• Diagnosis of PSP or CBD (or healthy volunteer)
• Living in East Anglia or able to travel to Cambridge

Contact:

Dr Negin Holland
Nda26@medschl.cam.ac.uk

 


Memory and attention in PSP (PSP only; Stockton-on-Tees)

Location: Dept. Psychology, Wolfson Building, Durham University, Queens Campus, Stockton-on-Tees

The study examines how PSP affects short term memory and attention. We’re particularly interested in how well people with PSP can remember sequences of locations, and find objects in cluttered displays. We will also measure eye-movements. We use computers and a touchscreen for the tests, which take about 2 hours to complete (including time for breaks).

Key requirements to participate:

• Diagnosis of PSP and able to consent

Contact:

Dr Dan Smith
0191 334 0436
daniel.smith2@durham.ac.uk