Calling for Study Participants for First Molecular Level PFS Study EVER ********************

bruins2 · May 25, 2018, 7:07am

so which study is being conducted at the moment? closer look at possible effected genes?

Sorryitookfin · May 25, 2018, 7:07am

I thought they were gonna inform us for donations for the current study and to participate in the studies if they need patients.I hope something good is coming out of this haven’t heard anything in a while.

Oscar · May 25, 2018, 7:07am

Allow me to summarise what has already been openly posted in this thread. The guys posting above me should really take the time to read the whole thing and learn the meanings of some of the key terms used. All of these studies where made possible by awor/40.

Three studies.

1. Penile Skin Biopsys of 10 men with genital numbness July 2011

Unknown what this test was for. Not a test of enzyme function, probably a test of AR gene expression.

Results in September 2011, did not explain the problem. Some difference found in the AR of those men that took part. Some arguments over what exactly has been found.

Study set for publication in the first half of 2012. But this has been delayed?

2. DNA saliva Test August 2011

To see if there are genetic markers common to people with PFS. A certain number of study subjects needed.

Almost enough study subjects in September 2011, still collecting samples December 2011. Dut to be published first half of 2012.

Now we learn still collecting study subjects? 10 months on?

3. A third proposed study for the future

A full genome gene expression test that will require private funding.

Im clearly missing quite a bit. For example, why the delays with the first two tests and why start talking about microarray gene expression profiling before the results of a simple DNA test are back? Also, someone may have had their neurosteroids tested at a university hospital setting.

191 · May 25, 2018, 7:07am

I’d have to admit further clarification on where we are at would be helpful and also any info on what we can do would also be useful whether be in terms of participation or knowing if we need to raise money.

In fact the funding issue needs to be discussed. How far is the establishment willing to investigate? What studies are actively in the works?

Awor says that a significant difference was found at the AR level or downstream of there. The details of the study will only be discovered by us when it is published. When is this likely? Has the paper been completed and sent to journals??

If they need more participants for example i have yet to be contacted in regards to the genetic study. I’d be happy to take part.

Oscar · May 25, 2018, 7:07am

No. Read the thread. No mention of any find ‘downstream of there’. This is likely one reason for the third study.

Really they should have easily reached enough participants 10 months ago. Easily.

Second_Amendment · May 25, 2018, 7:07am

Yes. Read the thread. Mention of ‘downstream of there’

I was also told the scientists want more subjects for more power.

donkeyboy · May 25, 2018, 7:07am

I will certainly participate in some way, shape, or form, given the opportunity…

Oscar · May 25, 2018, 7:07am

No. Read the thread. Read the quote. No mention of anything being found.

I hate to bother these people, but i did anyway, since its been almost a year and my life depends on it. This is what I got fom the scientists conducting the study. According to the ‘study protocol’ they have reached enough patients:

BP7667 · May 25, 2018, 7:07am

I am not gonna find it because I honestly don’t care, but somewhere in this thread, Awor does state that they found “something”. He didn’t get specific but he said they did find something.

boston332 · May 25, 2018, 7:07am

I recall the same thing as Broken. Unless I completely misunderstood, “something” was found in the behavior of the AR in our sample different from the control and the next steps were to try to localize the cause of that difference.

mariobros · May 25, 2018, 7:07am

I believe this is the post you are referring to.

awor:

I just came back from the PFS conference in Italy and would like to briefly report on the status of the research projects:

Study of penile skin biopsies: The experiment was only completed shortly before the conference. As such, the results are still preliminary. The data is still unpublished, and I am currently not allowed to comment about it in detail. All I can say is that a significant difference was found at the androgen receptor level between the PFS patients and the control group. However, even though the difference is substantial, it seems unlikely at this point that it alone can explain the problem. In other words, it is not clear whether what we found is rather a marker for our problem or part of the root cause. In summary, even though we found something, the available data is not conclusive yet. The only two things that I believe we can say at the moment are:

There seems to be some kind of abnormality at the AR level

Based on the data, some form of 5AR insufficiency seems highly unlikely

We will certainly need to conduct further experiments with the available material, and possibly expand the number of cases.

The next step in scientific investigation needs to be discussed and specified now. We have already started with these talks the day after the conference, and more discussion is still required. What is clear, though, is that the next step in our investigation will require us to participate in the funding. It also may require that further specialists are brought onto the team. In any case, we are headed for a very complex investigation.

Right now, we must give the scientists some more time to conclude their work. Our next steps are to work with the scientists in order to determine how to proceed with the investigation and what it will cost. I will give you an update as soon as we have a common understanding about these two questions.

Genetic Study: The second study, which has the objective of determining genetic markers, has almost reached the minimum number of participants required. We expect to be able to send out more saliva kits to the participants in the next couple of weeks and get moving. There are no further updates here at the moment.

So the bottom line is, that further patience is required. Please abstain from speculating about this and spreading second or third hand information. I will get back to you all as soon as there is new news.

BP7667 · May 25, 2018, 7:07am

Mainly what he said here:

dgreene · May 25, 2018, 7:07am

Does anyone have any idea when the study will eventually be published? Plus, I don’t think we need to worry about being so secretive if Merck added persistent side effects to label, everyone acknowledges that its true now. Any info would be great. I’ve been hearing about this study a lot here but where is it?

Second_Amendment · May 25, 2018, 7:07am

Italians… shakes head

dgreene · May 25, 2018, 7:07am

Hey SA, have you tried to come into personal contact at all with Ihatepropecia702? You both are from vegas.

Sorryitookfin · May 25, 2018, 7:08am

What’s shakes head mean??the study is in Italy do they have enough people.it would be great if they figured this out.scientists here should start looking into a cure or treatment

Sorryitookfin · May 25, 2018, 7:08am

Awor hasn’t spoke on this in awile I hope everything is ok.

moonman1 · May 25, 2018, 7:08am

Can anyone confirm whether the results will be known within a month or two like originally planned? A lot of people are literally hanging on due to this/these studies…

bluecloud87 · May 25, 2018, 7:08am

Mew, you said we can expect big news within the next 2 months. Is this news from the research?

BP7667 · May 25, 2018, 7:08am

Should only be in a month now.