OTHER RESEARCH PROJECTS
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.
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.
Alternatively, you can register your interest in taking part in future research studies by completing 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.
MoStrAct – Quantitative assessment of human MOvement, muscle STRength and muscle ACTivation in patients with Neurological Disorders
Location: Sheffield Teaching Hospitals NHS Trust and the University of Sheffield
In this study the team are recruiting people with a variety of neurological diseases alongside healthy volunteers to investigate walking, mobility and muscle strength. The team will collect information on your symptoms, health condition and quality of life. They will ask you to complete some physical assessments including walking and movement tests, and an at home sensor-based activity and mobility assessment for up to 14 days.
You may be asked to repeat these assessments up to 3 times over 3 years – this is to monitor changes in mobility and disease symptoms. You are free to decline repeating the assessments.
Contact:
Dr Ellen Buckley
sth.mostract@nhs.net
0114 2221899
OxQUIP – Oxford study in Quantification in Parkinsonism (PSP only)
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
oxquip@ndcn.ox.ac.uk
chrystalina.antoniades@ndcn.ox.ac.uk
01865 234728
Misdiagnosis in Rare Dementias
Location: Remote – project run by the University of Liverpool
Two parallel studies are looking to speak to people with rare dementias (including PSP and CBD) and their carers who experienced a misdiagnosis before receiving a rarer dementia diagnosis. Participation involves an interview from home that will take no longer than 60 minutes.
Key requirements to participate:
- Diagnosis of PSP or CBD or a carer of someone with PSP or CBD
- A previous misdiagnosis
Contact:
People with PSP/CBD
Abbie Dickingson
abbie.dickinson@liverpool.ac.uk
A carer for someone with PSP/CBD
Charlotte Marsden
charlotte.marsden@liverpool.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
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
Completed Projects:
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
e.de-natale@exeter.ac.uk
CONTACT US
For more information about our research activity, contact us on:
Tel: 01327 322418
