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Rare Diseases February 2019

PSP could hold clues for other neurological conditions

Andrew Symons

Chief Executive, PSPA

PSP and CBD are progressive neurological diseases affecting around 6,000 adults in the UK. Caused by the death of nerve cells in the brain, they leave people unable to balance, walk, talk, eat, swallow, drink and see.  

PSP and CBD are associated with an over-production of a protein called tau in parts of the brain.  Tau is also associated with Alzheimer’s and Parkinson’s diseases. The rapid progression of PSP and CBD make the conditions ideal testbeds for new therapies that target tau, and researchers believe it could play an important role in the development of treatments for other progressive neurological conditions.

Despite the devastating impact, PSP and CBD remain little understood. A diagnosis of PSP or CBD is extremely frightening, leaving those affected unsure of what to do next and where to turn. Many people with PSP and CBD can deteriorate incredibly quickly, so it is vitally important for them to get the support of specialists in a range of areas as quickly as possible.  People with PSP and CBD can often be in touch with up to 20 different health and social care professionals at any one time, therefore a co-ordinated multi-disciplinary approach is vital. 

For nearly half receiving a diagnosis of PSP and CBD, they will have received a wrong diagnosis first. Often meaning that by the time they find out they have it they will have already lived with the disease for a number of years.

National charity, PSPA was set up 25 years ago by a Michael Koe, a husband who lost his wife to the tragic disease. Appalled by the lack of support for people with PSP, he ran the charity from his kitchen table, with the single goal of improving the lives of all those affected.

Celebrating our 25th birthday during 2019, PSPA continues to fund research that is paving the way for new drug trials. Research is the most powerful tool we have for beating PSP and researchers strongly believe the accelerating pace of research into PSP will lead to future effective treatments.  The hope of finding a cure may finally be within our reach.

PSPA’s PROSPECT study is the world’s largest study into PSP & CBD disease progression, conducted in a network of national centres over a period of 5-8 years. Our researchers collect regular biological samples, brain images, and detailed cognitive and motor data from people affected by the conditions. This data will lead to the development of an accurate disease model that should provide an invaluable benchmark for future clinical trials. 

PROSPECT has generated a number of collaborations meaning PSPA’s original grant has generated increased funding or resources for more extensive research. This includes contributions from the research arm of the NHS, funding from other charities and use of the infrastructure for a major clinical trial.

It is only through collaboration we will beat PSP & CBD. To be part at the front of this global effort to target tau and potentially develop treatments for PSP, CBD and other neuro degenerative diseases go to www.pspassociation.org.uk/research

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