Baylor are looking at genetic links for predisposition to PFS. This will be done via penile skin biopsy.
Additional aspects of the study include the following: blood (5-alpha androstanediol/3 alpha-Adiol-G), urine, penile ultrasound, and biothesiometry - all of which must be financed by the patient, or their insurer.
they wıll research for mental sıdes, right?
The most devastatıng ıssue ıs mental sıde.
Im not me, everythıng ıs meanıngless. If ı save thıs thıng, ı really dont care other thıngs.
I was told by Dr. Khera that the control group consisted of men simply coming in for circumcision (so they’d get the necessary tissue), NOT men who took finasteride but developed no problems. They would never get enough of the latter. No one who is asymptomatic and not going to the hospital for other medical reasons is going to participate without reimbursement. Even with insurance, I was out a few hundred dollars.
Also, they’re looking at CAG repeats. Mine came back a little short, conflicting with the hypothesis that PFS sufferers have too many CAG repeats.
Also - as well as what? Are you able to say what else (if anything?) is specifically being tested, when I comes to the androgen receptor and ‘genetics’?
Well, hopefully you’re right. It does seem strange if they aren’t offering any remuneration for participating. I’m waiting to hear from Dr. Khera regarding my lab tests so I’ll try to get some clarification then. I will say that the research coordinator I spoke with was new to the project so it’s possible she doesn’t have a full grasp of the study components.
Only information from Dr. Khera or Vikram is reliable. April didn’t even know the study involved a biopsy.
AFAIK, this isn’t part of Dr. Khera’s hypothesis. It was only something Dr. Jacobs blogged about.
I have another question even if it is a bit off-topic but wasn’t there some time ago a study which was partly/full financed by Awor in which some fellow suffers made a biopsy of there foreskin . if yes , I know there where only a hand full of guys , did the scientist find something out ??
I think these two posts answer your questions.
I was under the impression that the results of the initial penile experiment were not intended for publication. Instead, they would be presented to other medical professionals with the aim of encouraging further investigations.
Said results may have been presented to Dr. Bhasin and Dr. Khera in order to convince them that PFS is indeed a somatic condition, hence they are now leading their own studies.
I could be wrong on this, but that’s my take on it.
Thanks a lot Mark_UK , hopefully there are not to many genes involved because what I’m afraid of is that these proteins/genes are for every single sufferer an individual thing , i mean some people suffer differently, then it could be possible, that certain genes are fucked up for person “a” while person “b” has no problems with it and person b has a problem with a certain gene while person “a” is not affected.
I hope you get my point of view … I’m not from an english speaking country …
and then of course the number of genes which are affected …
oh boy what a mess …
please anybody tell somethıng about study,
ıf they fınd a cure ı swear god ı wıll pay 10.000$ them. Even more.
The PFS Foundation is well aware of the results from the initial study performed in Italy. Both studies at WBH and Baylor have been specified in cooperation with the Foundation and are logical next steps based on what was discovered in the initial penile skin study. One of the aims, when the PFSF was foudned, was to help coordinate the exchange of scientific information and research data with the aim of progressing in the most efficient and effective way possible.
Thanks to this initial work, current PFSF studies are focusing on the right questions in the context of a comprehensive discovery strategy based on previous scientific evidence. Because of this, I am convinced that both studies will yield ground breaking insight into the molecular mechanisms of PFSF and will hopefully put an end to all the pointless speculating going on in this forum.
Patients are increasingly realizing that this problem is not generally patient nor doctor solvable. The reason for this is because PFS is a very complex problem, and the exact therapeutic targets are currently unknown. Potential targets will remain in the dark until these studies, and maybe it will take more, will provide us with crucial insight. As many of us unfortunately have found out, the simple treatment of (hormonal) effects of PFS seldom substantially improves the situation, at least not long term.
Both studies still need additional participants. If you cannot contribute financially, then at least try to participate, specially so if you are suffering from strong physical and mental symptoms as opposed to only sexual ones.
If you are experiencing problems with the recruitment process of any of these studies, please send me a pm.
Thanks.
Awor
Thanks for the update. Maybe speculation can be ended by revealing what was discovered in the penile skin tests? And how this ties into the recent neurosteroid study published by Prof Melcangi?
If you can’t provide this information, why cant you? (serious question.)
What is the target for total # of participants in each study and where do we stand right now as far as how many have already participated?
Hi awor,
Can you give us any idea when these studies will be released ?
It would give many of us something to live for if we knew when they were going to be released.
The release date of the study depends on recruitment, performing procedures, time needed to analyze data, write up paper, get accepted by a leading journal and then pass peer review. All of these steps are subject to variability which no one can predict. Hence, this question can not be answered. Let’s just say that the objective is to publish these papers as quickly as possible. The way you all can contribute to making this happen is by participating in the studies. In particular the Baylor study is still quite behind in recruiting patients. This is a shame, because the Baylor study is very important for understanding the big picture of this problem.
I will not comment on exact recruitment numbers or further details of the protocols of these studies. Regarding the penile skin biopsy, I have gone as far as I can go in the past in spelling out what was found. The link between certain effects such as altered neurosteroid levels, hormonal levels, etc. and what is going on in the periphery, will need to be determined.
ıs there any possibility to cancel these studıes ıf dont particicpate enough people?
Im not capable of participate, ım ın turkey and there are some works here.
I wıll donate the foundatıon soon.
I dont understand people who are close to the research ınstutites. What do you have to lose? Why dont you participate? Please support studies. We need you.
How many PFS sufferers were required for the Baylor study?