Cheryl, I can't seem to find the post you wrote and that I FINALLY have a reply for; I'm sorry to stick it here on this thread... but maybe it'll keep the discussion floating! We need consistent answers!!!!
... I asked my site coordinator about MRI information...here's what I was told:
"Per the sponsor, they are not releasing the study MRI results to the subjects until the final study report has been submitted to the FDA and the manuscripts have been published. As for the MRTC results, that is a proprietary assay used for research purposes and they are not releasing that information either ."
So, I won't be getting any MRI information.
Cheryl, I hate to sharpen my fangs before lunch but I can't resist: your site coordinator is a beeeeeeech. A lying one, at that!
How do I know this, you may ask?
'Cause yesterday, during my exciting day, my neuro pulled up two sets of my MRIs: one was the preliminary (May 2, 2007) and the other one was from my Week 52 (May 7, 2008). I'll give details in a separate post.
All kidding aside, that site coordinator needs to put some common sense to work here.
IF a subject has been on Tovaxin and the MRIs show continuing problems, that person should be given the news as soon as possible in order to make an INFORMED decision.
That IS what “open label” is supposed to mean, right?
Would you like to borrow my flame-thrower?