I think the original study completion was somewhere between 1-2 years. However as things have gone on much longer you might assume that the study is more complicated than first thought. After the outcome of the Harvard study it’s only natural to think the worst. Even if the study is successful is it going to present a viable treatment? Would a Dr just prescribe us a drug without knowing if it can treat PFS? They would probably want to see a study were participants with PFS are successfully treated. Do we even know why we get PFS in the first place? It seems not.
At some point in time even the biggest optimist is forced to conclude that this study is dead in the water. What else can one expect, if a study is still not completed 6 years after the announcement and no update has been issued? I dont buy the “we cant say anything in public” argument, as a simple update doesnt need to divulge any details.
Didn’t we have forum members who claimed that they had insider knowledge that there were big discoveries made with this study?
Yes. Thats probably the most absurd part of this story. We had members claiming this but nothing from an official source on an official webpage. Its unprofessional at this point, especially since the foundation funded the damn study.
We really can’t catch a fucking break it seems.
The problem is that if you refuse to issue official updates (private email conversations do not count for something important like this) despite having funded the study and even though the study is delayed by years, it will morph into a credibility issue. And thats not me pushing this theory, I am a big fan of funding studies, but just how something like this works. Just look at this forum as an indicator.
A while ago (a year or two?) the PFS Foundation announced a new study by Melcangi/Milan into epigenetic changes caused by fin. At the time I speculated online that possibly the Foundation was initiating a second epigenetic study in the event that Baylor doesn’t complete their study for whatever reason. That still seems like a possible reason why they initiated the new study. I would have to say I have more confidence in the Italians than Baylor at this point.
okay, whats the next step we can take to get an official update? or at least push for it, let them know we still exist and need to hear something.
I mean I live about 2 1/2 hours from Baylor but I don’t want to make the drive just for them to tell me they don’t know what I’m talking about or that they can’t disclose any information to me
I wrote Phillip an email today to let him know that I feel the issue is morphing into a “credibility crisis”. I politely asked him to convince the foundation that an official update is needed.
It is not how something like this works, so I hope others are aware this is a false premise. We are in contact with the foundation at all levels and the scientists involved. Awor was personally involved in the design of this study. We have given an update regarding this. If you would like confirmation the study is ongoing you can email the foundation’s media/patient contact, but there is no possible public “official update” to research intended for peer reviewed publication except that it is ongoing.
Regarding the concerns in this topic (again): Nobody likes waiting and we too are hoping very much they’ll produce a high quality paper, however it is not useful to anybody to be increasingly hyperbolic when it is not within anyone’s control but the publishing scientists. Beyond that, the peer review process is not always entirely predictable and could see further delay.
Good post btw @Northern_Star. True indeed.
Re my email: Philip told me that there is no official update but that they will let us know as soon as its published. Make of that what you will.
Perhaps Merck or GSK are putting legal pressure on them to not release their findings?
Yeah this is really funny, i know medical studies takes long time. But not this long… only fucking thing they have to do to examine the effects of Fin on Overexpressed androgen receptors. The problem is simple. Not for us, but for them, it must be simple and easy with all of those technical stuff and knowledge…
I mean just take some damaged cells and examine them, examine the process of AR overexpression etc. How the hell this process can take 5 years? I mean, if you think logically even in the first months they should have find something interesting about our damage…
I sometimes feel and think like this whole thing as a big joke. Our condition, pharma, government and this forum…
thank you cooper. i feel the same. i mean having future problems (no studying possible with this cognitive impairment) because of a HAIRLOSSPILL? that sounds completely like a joke. everytime i see someone with hair problems i think wtf i have done? for what has it been worth? ive lost everything except my hair, and payed money for it
The publication has been completed and submitted and is being reviewed by journal.
Shouldn’t be much longer now. i guess as soon as the publication is approved it will be released.
Any idea how long that process usually takes? Days, weeks, months?
Finally, a step forward in understanding our malady. I strongly doubt it will directly lead to any therapeutic path, but it will be interesting nonetheless. After all, it’s been 5+ years in the making!
What’s your source?
How do you know it’s been completed?