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PROSPECT Research Study and Network

What the PROSPECT study is and how you can get involved

The PROSPECT STUDY and Network

PSPA has invested £1.3 million into the PROSPECT study, which is the flagship project of our Research Network and fulfils the core aims of our Research Strategy.


THE PROSPECT Network

A major step towards the fulfilment of our research strategy is the creation of the PROPSECT Study Network. The network is co-ordinated from the Institute of Neurology at UCL and currently involving seven primary centres with a strong history of PSP & CBD research and care.

The network brings together leading experts from many areas of biomedical research, including neuroimaging, clinical analysis, pathology and genetics. It will allow pooling of patient samples and data and will provide a basis for communication and collaboration through which proposals for further research can be built.

The network embarked on a major study across the UK known as PROSPECT beginning in 2015.

Professor Huw Morris, PROSPECT Network Chief Investigator

“We believe that the network can address some of the barriers to research and be providing better care for patients.”

PROSPECT Study

The PROSPECT study has two arms. One part of the study involves the collection of blood, spinal fluid (from a lumbar puncture), brain scans and clinical information from a cohort of patients over several years, enabling researchers to make new discoveries based on the way that PSP & CBD change over time. Participants can choose to undergo some or all of the tests.

A separate cross-sectional arm of the PROSPECT study collects one-off blood samples, generating a resource for investigating indicators of disease in blood as well as genetic data. Anyone with a diagnosis of PSP or CBD can take part in this arm of the study and you can give your blood sample at your local GP surgery.

Read about some of the findings PROSPECT has achieved so far, in our research achievements section.

The ExPRESS Study

Whilst the important work in the PROSPECT Study continues, in July 2023 news broke of further mapping work being conducted in the UK.

The National Institute for Health and Care Research has announced an amazing £14 million investment into rare disease research.

As part of this investment, PSPA is pleased to see Professor Huw Morris at University College London has been awarded a grant to continue important work of mapping the journey of people with atypical parkinsonian disorders, which was started by the PROSPECT study.

The Early Assessment, Diagnosis and Treatment of Parkinson’s Plus Related Syndromes (ExPRESS) led by University College London, began later in 2023 and aims to recruit 500 participants by 2028.


Interested in taking part in the PROSPECT or EXPRESS study?

To participate in this part of the project you will need to have been diagnosed with PSP or CBD relatively recently and be able to visit a network centre regularly. The centres are in London (Institute of Neurology at UCL), Cambridge, Oxford, Manchester, East Sussex, Newport and Newcastle-upon-Tyne. You will need to speak to the Study Coordinator (details below) to confirm your eligibility to take part. Healthy participants are also needed.


PROSPECT AND ExPRESS study coordinator

Riona Fumi

prospect@ucl.ac.uk

express@ucl.ac.uk

CONTACT US

For more information about our research activity, contact us on:

Tel: 01327 322418

Email: Research@pspassociation.org.uk