Thank you for participating in the study, that was not required of you. It will be published and I understand your frustration that it has taken so long but this sometimes happens with the scientific process. Social change doesn’t happen overnight but there is building momentum.
Yes it will be published everybody knows it, the problem that I see here is that there are not motivation and lack of real interest on finding out the cause of the problem or to solve the problem, I and what also see here is the money interest around the problem.
If you guys want to play to be blind you are welcome to the game…the Baylor study is pointless and mark my words…
In my modes opinion about this study you know what : I don’t really care…the only thing that bother me is to see many people here very affected by PFS with a tremendous hope in that study. I am going to bet my balls that this Baylor study are not going to take you anywhere from what you are.
I am felling better and better and the only reason that I am in this forum is because I want to see you guys to improve your condition, because I know how terrible PFS is, I am trying to give my contribution with advised of what I feel that maybe help me out, but is hard because everybody is different.
I think that the foundation and everyone of you as individual should put an effort to change the direction of how to address this situation, because time is clicking and you don’t want to end you lives been a seating duck waiting for a joker researcher find the scientific solution.
Yes the science is the way but when are involved peoples and doctors and researcher that really want to help without the interest of having a pile of money at front.
Sorry, but its a fact that this study is still not published, 6 years after it officially was announced by the foundation, with rumors swirling around that only 50% has been completed and the uninteresting bit at that.
Should we praise the good doctor for taking the foundations money and then failing to complete the study within a normal timeframe?
No one has to praise anything, but you would do better to have some patience rather than embracing rumours and guesswork that are clearly having a misleading influence. Your post shows this is the case. What precisely makes that “swirling” rumour appealing or credible to you? What did you find convincing about it?
What is a normal time frame in your experience for exactly what they are doing? I’ve pointed out it took melcangi 1/3rd of the elapsed time to publish a paper in a much smaller cohort looking at the status of 2 genes - about 20,000 less - in a simpler analysis.
Let’s also not forget that it took almost two years of patient recruiting. That’s on us.
Melcangi has recruits readily available and it still took him two years to complete his study that is galaxies apart in scope from what Baylor tries to accomplish.
I know it is frustrating that it takes so long. Believe me, I was here in 2012 when Awor first published his roadmap of studies. I never expected that by 2019 we would be only about halfway through. But it is what it is. Nobody is really happy with that, but baseless rumors and insulting the lead scientists are not going to speed things up.
Awor has made it clear that ideally we would like to hire researchers commercially, where we call the shots and they answer to us. But as long as we lack the funds to do this, we are dependent on the goodwill of the scientists. It is worth to keep this in mind, when people insult the few scientists that are willing to work on this problem.
I know people need to vent sometimes, but it’s pointless to have the same discussions over and over again. It’s only generating unrest. Let’s keep this thread for actual news.
How about getting the funds from here?
It’s not enough. We would need more than ten times the prize fund.
There is a lack of coordination between members of this forum and the foundation. There are lots of opportunities to speed up recruitment but all of them start with integrating study recruitment tools into this forum.
It would be nice to have the RxISK fund available for use in studying this condition. It is what the money is intended for after all, even if it is a drop in the bucket.
Hopefully it doesn’t get handed out to some researcher who demonstrates marginal effects of some dubious therapy.
Yes no matter if Merck is disrupting studies, I think the foundation is making a great job! With the forum and the researches, if they ask us for help sure we can do it.
Now its 21 weeks. Should be published any day now, if it passes peer review.
Was it just a rumour that it would be in two parts or was that confirmed?
He told @MOONCHILD this in person and Phil Roberts told me it was 2 parts…
Sounds like that’s a yes then.
I wonder what the motivation would be to release it in two parts.
Here’s the catch: no one knows what’s going to be in the first or second part.
Maybe everything we need right now could be in the first part.
Perhaps, but it still begs the question as to what the use of the second part would be then.
The first part do not include genetic study.
It also begs the question what’s the point of creating confusion in this thread when the fact is no one knows anything.
Not blaming you, just saying we’ve been going in circles in here. Check it out
I don’t have to prove it, that was Khera told me in person.