I've been invited to join a new research study. There haven't been patients with negative side effects, but it's too soon to know if they have seen any benefits. I'm pretty nervous since it's so early and the cohort has been really small thus far.
Hi Jocelyng . . . I am currently in the Roche/Prothena clinical trial now going into my fifth year. The purpose of this trial was to determine If the Prothena medication would slow down the progression of the disease. Despite an infusion every 28 days the PD has still slowly progressed. But, has it progressed faster had I not had the medication over that time? Don’t know!
My advise would be to personally visit the trial site and ask if there were any adverse events encountered by any of the cohorts in the phase 1 trial. Also, ask if any of the cohorts noticed any improvement after taking the medication. At my clinical trial site (they proctored phase 1 of this med as well) and I recall one of the nurses saying there was quite an improvement noticed by some of the cohorts.
If I were able also to get involved in this trial I certainly would consider it!! Biogen has a lot of experience in neuro matters and I like what Denali has done thus far.
Last, know that chances are very small that this med will have the intended efficacy. But, how does a new cure/treatment break through unless we get involved in clinical trials!!
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