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Progressive Supranuclear Palsy CorTico-Basal Syndrome Multiple System Atrophy Longitudinal Study UK

Trial categories: Brain;

Sponsoring organisation: University College London

The PSP Research Network is made up of a group of seven PSP clinics which have been brought together to work in collaboration, sharing their database of patients and samples.

The network, which is based at the Sara Koe PSP Research Centre at University College London, will work towards improving early diagnosis of PSP and, through its links with people with PSP, will be able to evaluate whether the care and support they receive are of the right standard.

The first study to be approved for the network is a UK Research Network Study which will involve a clinical assessment looking into the background to the development of PSP, and the current disease stage. Patients on this study will be assessed at several clinic visits to measure the change in the disease over time. They will then have their 'biomarkers' stored, mostly based on blood samples, which may provide new ways of tracking and measuring the disease and insights into the disease.

Patients being recruited to join the network study are initially likely to be referred via PSP clinics around the country, including the centres taking part directly in London, Cambridge, Newcastle, Manchester, Cardiff, Brighton and Oxford. However, people outside of these areas can also apply to take part via the PSP Association. They will need to agree to join the study, complete questionnaires and agree to donate blood samples. They will be recruited to the study via a UK-wide registry, and they will not have to travel to a study centre.

"There is no time restriction for people to take part," said Prof. Huw Morris, the clinical neurologist who is leading the network. "But the likelihood is that the majority of people will have been diagnosed over the past two to three years."

The PSP Association is funding the Research Network, but more funding will be needed as the network grows and further research projects are developed.

Fergus Logan, Chief Executive of the PSPA, said future partnerships between the charity and organisations such as the Medical Research Council, the Wellcome Trust, the National Institute for Health Research and research-interested Trust Funds will be crucial in helping the project to grow.

"The success of research can never be guaranteed, but our expectation is that this network will lead to improvement in the early diagnosis of PSP and related conditions as well as new approaches to treatments," he added.

The first patients taking part in the new PSP UK Research Network Study are due to be recruited this summer.

If you are interested in volunteering to join the PSP Research Network and have a diagnosis of PSP or CBD please contact: