One part of the study will involve 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 and CBD change over time. Participants can choose to undergo some or all of the tests.
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, E. Sussex, Newport and Newcastle-upon-Tyne. You will need to speak to the Study Co-ordinator (details below) to confirm your eligibility to take part. Healthy participants are also needed.
“Thanks to this study, our knowledge of PSP and CBD will dramatically increase so that we can build a more accurate disease model for future clinical trials.”
-Dr John Woodside, PROSPECT study co-ordinator
A separate cross-sectional arm of the PROSPECT study will collect 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.
“It’s really important that we can take part in this project locally – with my health not being 100% either, I don’t like to travel too far.”
-Heather Howlett, whose husband Peter is living with CBD.