Anyone involved in Buntanetap trial (AnnavisBio)? Can you share first experience?

[rancsikanna]

Hi! We have just been informed that the trial is coming to Europe and we would participate. Does anyone involved in trial and already started taking the first dosage? Can you share your experience?

thank you

[Hidden]

How can someone know if they are getting the placebo or not? Just wondering...

[rancsikanna in reply to Hidden]

Dont know, butvat least somr info

[jimcaster]

I am participating in the Buntanetap trial at the University of Kansas Medical Center in Kansas City, Kansas. I was evaluated and approved in December, had my first dose after a baseline visit in January, and am going for a monthly check up on Thursday of this week.

I take one small pill each morning. One third of trial participants receive a placebo, but the trial is double blinded, meaning neither the doctors nor I know whether I am receiving an actual drug or a placebo.

The trial only lasts six months so I will be done in July. I'm sure your primary question relates to whether I feel any better or worse and that's hard to answer. I don't want to unduly influence anyone's expectations, including my own. I can only say for sure that I have not had any negative side effects and that I am happy to do my very small part to advance our collective knowledge about PD. In the meantime, maybe I will get lucky and be among the first PwP receiving game changing medication, but my I am not holding my breath.

[PDWarrior1900 in reply to jimcaster]

WIN JIM WIN! WE'RE ALL PULLING FOR YOU!

[MBAnderson in reply to jimcaster]

Jim, Have they said or have you asked if they will supply the drug after the tests?

[jimcaster in reply to MBAnderson]

I asked, but got no definite answer. Another trial participant says he was assured that we would get the drug for an additional year if it's beneficial, but the investigator in Kansas City said she was not aware of that. She did say she would lobby in favor of it because it seems unethical to stop treatment abruptly if the stuff works and it's a nice reward/incentive for participants.

[rancsikanna in reply to jimcaster]

I have red this extra 1 year on the the official site clinicaltrials.gov

[jimcaster in reply to rancsikanna]

Can you copy and paste that from clinicaltrials.gov? I can't seem to find it.

[Delaraysbest in reply to jimcaster]

Jim, any update from your trial? Hope all is well! I’m

[jimcaster in reply to Delaraysbest]

I didn't experience any dramatic improvements, but didn't have any negative side effects, either. In the best case, maybe it slowed progression, but there's no way to know that.

[Delaraysbest in reply to jimcaster]

Do you know that you did not have the placebo at the end of the trial?

[jimcaster in reply to Delaraysbest]

No, I don't know and I am not sure if I will ever know.

[rancsikanna]

Tjank you for answer

[HekateMoon]

Where in Europe? I wouldbe very interested...any more info? Thank u!

[rancsikanna]

In Hungary, Poland, Spainm Italy. Check the company site for details and contacts

[tacato]

I am about two weeks into the study. The study protocol requires participants to make one site visit per month in an “off” drug state. That’s no fun. Also, I don’t understand why the study is so short (6 months). In a slowly progressing disease like Parkinson’s how does the study sponsor expect to show a difference in just six months?”

[lamboman in reply to tacato]

Do you see any improvement so far?

[jimcaster in reply to tacato]

I think the Phase 2 trial was only for 25 days. That has created assumptions and expectations for me which probably aren't helpful.

[rancsikanna in reply to tacato]

Actually I was thinking what to expect. Is it not clear for me that buntanetap would also revers the parkinson =heal the neurons or just improve the symptoms? Has anyone reviewd the phase2 results? Was the UPRDs score impruvement significant? My husband has never been measured based on this score so I do not know how to evaluate it

[BeedieBird]

I went through the initial screening here in the U.S. (Washington State) and declined to participate after finding out I had to be off meds for Parkinson's for 12 hours prior to each visit to the clinic for the neuro exam. That would be too difficult and painful for me. Good Luck to any who have joined and can proceed through it.

[DJJD3]

I just started my 3rd month of the trial in Kansas City. I'll be done in June.

I have't experienced any dramatic changes either way so far but I'll let the process play out and see what the evaluation data from the monthly visits says at the end.

[zogi]

I completed trial. Fatigue, anxiety, energy, cognition, attitude — all better. Tremors and gait a bit worse. I think I was on meds, but not sure as blinded. I think it works. Would like to get on 12 month extension.