PLACES IN THE US DOING CLINICAL TRIALS FOR PSP

/www.clinicaltrials.gov/ct2/show/study/NCT02494024?term=psp#contacts THAT IS THE SITE WHICH GIVES YOU STATES, LOCATIONS AND TELEPHONE NUMBERS. SPOKE TO THEM TODAY, THEY WANT TO SEE MY HONEY TO EVALUATE HIM. TRUTHFULLY I DON'T THINK HE WILL QUALIFY BECAUSE OF HIS AGE AND OTHER HEALTH ISSUES, BUT GUYS GIVE IT A TRY.

Auddonz (Audrey)

12 Replies

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  • Thanks Audrey. Checking it out.

    Nikkie

  • Let me know what happens please Nikkie.

    Audrey

  • I will be thinking about you and am interested in the outcome.  Stay Strong.

  • Cuttercat, I am trying but so tired. They called me today and said they will have the next trial in Oct but will have to see him before to see if he qualifies. He has other health issues.

  • Thanks Audrey it is great to see people in the States are doing trials and studies my only regret is that over in Europe/UK very limited research at present I keeping checking NHS research web site but very little and or only want early stage PSP.  So M cannot participate, so brain donation is only thing left, but hopefully many years before that happens.

    Thanks and here's hoping someone finds something that can delay or slow PSP and all other brain conditions or even a means to stop it developing in first place.

    Tim

  • Tim, They started the trials in British Columbia and it has been approved by the FDA here in the USA. They have completed 1 trial and the second will be in Oct. Could take 7 years before everything is approved, who knows. If I get any other info will post it. My husband is 78, not young.

    Audrey

  • CN2 Study start in July 2016 in Dallas Texas. They make it seem like they want you to live in the Dallas area. Emailed them again asking more questions. Will keep you posted.

    Thanks,

    Nikkie

  • They called me from Shands movement and disorder center. Second study starts in Oct but it is an infusion study and he will not qualify since he has a pacemaker. They still want to see him, why I don't know. The last 2 days he has had 3 falls. His condition has changed very suddenly. Spoke to his neurologist and he has an appointment with her on May 13th. Middle of the night last night he fell on his knees, just now he fell and hit his nose. He was having a very good day today until this last fall. I am fit to be tied.

    Auddonz (aka Audrey)

  • Sorry to hear about the fall Audrey and I hope today is better.  My guy had a fall to his knees yesterday--thank goodness to breaks. He is getting so stubborn about wanting to do something and does it whether I recommend he does not. It's like he doesn't care/rebel type attitude. It's different. Ugh!

    Nikkie

  • Yes, they do get stubborn, drives me nuts. Very lucky he is ok. I do think they have no concept of whether or not something or anything is right to do or not. Like a kid who doesn't understand :( . They just don't understand.

    Audey

  • Good luck, friends

    AVB

  • I contacted UCLA and at least there, Phase 1 (safety, tolerability and  pharmacokinetics ) is closed for enrollment.   Phase 2 is expected to start in late summer. 

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