I’m curious as to what they did again and I haven’t heard many people say they participated… also someone has to have a way to contact no?
4 Likes
@awor is in contact. we just have to be patient. the scientific process works like this, you aren’t going to have full transparency as to what stage they are at and what the data is saying.
2 Likes
We’re all pretty aware of @awor s involvement, but surely a PFS patient who participated in the study must belong to this forum?
ahh sorry misread the last sentence. yeah i dont know anyone as ive just recently started participating in this place
Several cases known on the forum participated, with a range of severity. Regarding contact, we maintain contact but nothing will be shared until publication.
I posted an update regarding this here:
2 Likes
Wish I had participated but I found out about it too late. I live only an hour or so from the Baylor campus so if they needed more data from a pfs patient i would definitely be willing to make the trip and contribute.
2 Likes
I wonder who are the guys on Baylor study that got tested and involved in the study?
Anyone knows who they are? Why they aren’t in this forum and how did Khera find them?
I hope they publish the part 2 next month as they claimed…
Your recently-posted topic has been merged into this one.
Please use the search function in the future.
If you browse through the history of the “Baylor” topics, you will see that there were at least several members of this forum who contacted Baylor and participated once recruitment for the study was announced.
Guys it ain’t happening…Khera told me it is not even finished yet still analyzing data…So it won’t be out this year so I would quit looking for it…
I would think next spring at the earliest because it has to go through peer review and all that crap said before here…It is still ongoing and has not even reached that stage yet…so its a waste of time 
to pander about it…
3 Likes
Totally agree. We should give up on Baylor. Eight years overdue, give me a break. Not happening. No updates from the foundation or the admins. We’re back where we were 10 years ago.
1 Like
Didn’t you also say that it would come out in september? Or wasn’t it you? And how do you know for sure that it won’t come out this year? When did Khera tell you this?
2 Likes
So Khera specifically said that it has not gone through peer review yet?
Or did he just say that Utah is working on analyzing data still and we are just drawing conclusions from it?
Genuine question, because I’ve heard 3 variations now from different people
He just said he and the genetics department at Utah were both analyzing it…So I couldn’t imagine the study is closed and in peer review yet…
7 years ago this study was announced, 8-9 years before publication.
This study is never coming out imo. Wasn’t the deadline the end of November of this year? A multi-billion dollar pharmaceutical company will never let a study publish that would damn them and possibly bankrupt them. I’m not trying to sound like an ass, I’m just tired of being sick and things getting worse each year. I legit may have lost hearing in one ear at the age of 26. But yeah, I wouldn’t count on this study ever releasing.
I was part of the study, i know nothing, if not less than you do . i am happy they are doing this study but since it was paid for by the foundation, i feel as though they should be going faster given i gave part of my sack to them…
5 Likes