Research paper in JAMA Neurology

In December, PSPA, the UK Association for people with PSP and CBD published initial results from the PROSPECT study which it funds. PROSPECT is a longitudinal research programme which uses MRI scanning, blood and cerebrospinal fluid samples, genetics, and clinical assessments to find ways of tracking disease progression and improving diagnosis.

The primary stage of the study discovered rarer presentations of PSP are as frequent as the classical form of PSP, indicating that the disease may be twice as common as previously thought. This means there could be up to 10,000 people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) in the UK at one time, twice as many as previously thought.

The findings, published in JAMA Neurology, also found baseline data from the first five years of the PROSPECT study which showed that 50% of people living with PSP had a delayed diagnosis because they initially presented with symptoms similar to other neurodegenerative conditions such as Parkinson’s disease and frontotemporal dementia.

As the study continues, the team of researchers hope to discover biomarkers and diagnostic tools which will enable better outcomes for people with PSP & CBD in the future.

Additional funding for the study has come from University College London, CBD Solutions in Sweden and other organisations.

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