Overview
Progressive Supranuclear Palsy (PSP) is a rare brain disease that that causes problems with walking, swallowing, speech and eye-movements. Unfortunately, because PSP is a rare disease it often takes a long time for patients to receive the correct diagnosis. Indeed on average it takes 3.5 years longer to get a diagnosis of PSP than a diagnosis of Parkinson’s disease (PD), and about 50% of patients with PSP receive at least one alternative diagnosis before thier final diagnosis of PSP. Delayed diagnosis creates significant additional burdens for patients and thier families in terms of uncertainty, and makes it a lot harder for patients and carers to gain access to the financial support needed to adjust their lifestyle to maximise their quality of life. For example, patients with PSP often require home adaptations and wheelchairs to compensate for their reduced mobility. PSP is also associated with greater risk of falls, which increases the burden of additional hospital visits. Delayed diagnosis also affects the ability to recruit and enrol patients in clinical trials of drugs and other therapeutic interventions. Patient groups and doctors agree that research into new tools for diagnosis of PSP should be a high priority.
First steps
Figure 1: Average reaction times to spot an ‘odd one out’ among 4 or 8 distractors. From Smith et al., (2022)
In 2015 we collaborated with Dr Neil Archibald from James Cook University Hospital in Middlesbrough and the PSP Association on some focus groups. These groups identifed early and accurate diagnosis as key concern for people with PSP. A small pilot study (2016-2018) explored how cognitive functions such as attenton and short-term memory were affected in PSP and Parkinson’s disease. The key finding was that people with PSP had very severe problems with some types of visuosptatial attention, in particular the ability to spot the ‘odd one out’ in a cluttered scene. The figure shows reaction times for people with PSP, Parkinson’s diseases and age matched controls. As you can see, people with PSP were much slower to make correct responses. People with PSP also had reduced short-term memory. We published our findings in the journal Cortex, and began developing plans for a larger study.
The Dunhill Medical Trust
The results of the pilot study were very promising but the sample of patients was small. One of the reasons for this was that the project relied on people coming to Durham to take part, which can be a problem for people with PSP who often have mobility problems. To try and address these issues we (Dan and Neil) joined with Drs Alison Lane and Tony Atkinson (Durham University), Dr Clare McDonald (Queen Elizabeth Hospital, Gateshead), Dr Uma Nath (City Hospitals, Sunderland), and Prof Richard Walker (Northumbria Healthcare NHSFT), and in 2018 we secured funding for a new three-year project from the Vivensa Foundation (formerly Dunhill Medical Trust). This project involved a much larger group of participants, and by taking the tests to people’s homes rather than asking people to travel to Durham, we hoped it would be much more inclusive and accessible than the pilot. However, just as we were about to begin the pandemic struck, and the project was put on hold.
Restarting
Alexis demonstrating the visual search task, which is a test that measures visual attention.
In January of 2022 our project got the green light to restart (REC: 19/NE/0369), and in March 2022 the Durham team were joined by a new team member, Dr Alexis Cheviet. Alexis is an expert in eye-movements in clinical neuropsychology and managed the project. The new project continued to explore attention and memory, but also tested other aspects of cognitive function such as emotion recognition and mental imagery (the ability to see pictures ‘in the minds eye’).
Recruitment Ends
We closed the trial to new entrants in October 2024 and data analysis was completed in Spring 2025
Project completed 2025
The project was complete in May 2025. A summary of the key findings can be viewed and downloaded below, but the take-home message is: Yes, cognitive tests can reliably differentiate PSP and PD, and the visual search task is more accurate than any other test. This exciting finding may be the first step in developing a new diagnostic tool to help facilitate earlier and more accurate diagnosis of PSP. We are tremendously grateful for the time and effort of the people with PSP, Parkinson’s disease and the age-matched controls who made this research possible, our wonderful colleagues in the NHS and PSPA who recruited participants and the Vivensa Foundation for funding this project:
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Open in new tab Project Data
Data from the visual search task, MoCA and VSWM tasks are freely available on Open Science Framework
MRC Gap Funding
In September 2025 we were awarded funding from the Medical Research Council (UKRI 3260) to begin a new trial called SpBellsPSP to validate the use of visual search tests for discriminating between PSP and PD. You can find out more about this project here.
