Novartis Research Trial: The Novartis... - PSP Association

PSP Association

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Novartis Research Trial

HelenPSPA profile image
HelenPSPAAdministratorPSPA
7 Replies

The Novartis research trial may offer hope to people with Progressive Supranuclear Palsy. The trial, which is currently involving three patients in Southampton, is aiming to disrupt changes in Tau.

We're proud our Trustee Dr Boyd Ghosh and his team have been part of the trial in Southampton.

bbc.co.uk/news/uk-england-h...

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HelenPSPA profile image
HelenPSPA
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7 Replies
Saffron21 profile image
Saffron21

Thanks so much for sharing. How are patients selected for trials? My dad's neurologist is based at Southampton but this has never been mentioned to us

HelenPSPA profile image
HelenPSPAAdministratorPSPA in reply to Saffron21

We're aiming to get some more info about the trial and will update as soon as we can.

HelenPSPA profile image
HelenPSPAAdministratorPSPA in reply to Saffron21

Hi there - just following up on this. It is a very small trial of only four people and it is the only UK site at present.

daddyt profile image
daddyt

Hoping for a positive outcome.

oilman1 profile image
oilman1

Also hoping for a possible cure.

Afar profile image
Afar

Thank you for sharing. Hoping for for positive outcomes to aid people with this awful disease in the future. Interesting to read 3000 people in the uk have PSP…that sounds to me like quite a lot and still I am met with blank expressions from so many medical professionals when I say my sister has PSP.

Even a scouting colleague who is a GP responded ‘oh that’s a bit like Parkinson’s, tell me more’

I feel like I’m on a mission to spread knowledge of the condition in the hope that earlier diagnosis can better prepare folk for what’s to come. Mind you it’s so very hard to rationalise and accept the info on the disease even when eventual diagnosis is made.

Zibo profile image
Zibo

Dear Helen, since my mother passed away with PSP, just last year, I am very interested in finding out more about the presence of Tau protein. Do you know if there is a way for family members, which we know they have a genetic risk of having PSP, could look into finding out IF they have Tau in their system? Thank you for letting us know about the trial and for all you do. Antonella

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