Study updates

Science PFS Research
#1

So far there are three important studies underway.

University of Milano-Bicocca and University of Milano
pfsfoundation.org/news/2061/

Brigham and Women’s Hospital (a Harvard Medical School Teaching Affiliate)
pfsfoundation.org/news/clini … affiliate/

Baylor College of Medicine
pfsfoundation.org/news/clini … -medicine/

This thread is intended simply to update people on the status of these 3 studies. If you have any updates regarding them please post here. It would be best if this thread is kept on track and not a place of discussing personal stories.

Baylor still need controls for their study.

Does anyone know the current status of the studies at Brigham and Milano?

#2

Well first Id like to share a personal story :slight_smile:

I just returned from Baylor. Khera was honest and said he has no idea right now what the genetic testing will find. Said to expect study out end of the year. As always take these publication dates with a grain of salt.

Harvard swears to be first to publish and my source claimed as early as end of summer or early fall.

I email back and forth with Melcangi. He is convinced neurosteroids have a big role in all this. I asked him about allopregnanolone and said he thinks supplementing could be an option for us, but like all good researchers wouid not know till study was finished and all data analyzed.

As for actual preliminary results, I doubt anyone has any hard opinions of these guys yet, but awesome to see some posts here.

Baylor study delayed again
#3

Are any of these studies still looking for patients?

#4

Do they need many more in the Italian study?

#5

Yes i think so but they only accept people from Italy.

I think Brigham have enough.
Baylor need controls - i.e. people who haven’t taken finasteride ( i think).

#6

Thanks for the info… its frustrating that they don’t allow people from outside Italy to participate…

#7

I am talking about Boston and Texas studies. Anyone in touch with them?
I really hope this is not another non-result, or maybe worse, they will simply find some genetical differences between us and those who do not get PFS…and then what do we do…

Sorry for trying to anticipate, but I am like many of you, can’t deal with this anymore. On another note, a girl is visiting me soon, but I am in a bad period, anything you recommend to maximize my chances? I re-started Progesterone as that typically helps…

#8

I realized this month that me and my older brother both have taken finasteride yet he has not had any problems and I have. We may just be the ideal two to research about. I would be willing to pay for him to fly with me to be involved in a study.

#9

Numbduck, do you take test boosters? Don’t worry about cycling for now and just take Tongkat Ali everyday until you see her. I took it everyday once for a month a half and the results were still great. Or just take 2 days off a week if you’re really worried about your body getting used to it.

#10

I went to Baylor but have not gotten back my genetic testing yet. Has anyone who went there gotten theirs back?

#11

Could someone explain that with this genetic testing, they can see any genes that are switched off or on in the body? Or is this specific only on the tissue where its taken from. So if this test comes out andwe have no genetic changes we are 100 percent sure this isn’t genetic or there are still possibilities and other areas to look for genetic changes?

#12

Are they testing to see if the 5ar enzymes is operating optimaly?

#13

I would also appreciate an explanation. What I understand about the genetic testing is very elementary.

#14

this would be interesting!

#15

Yep my brother never had a crash and is running like a champ and to be honest we are very similar. I would like to see what the major differences between me and him are that might shed a clue. Without a study willing to do it im shit out of luck cause dr here in canada only know what they can read from a book.

#16

Just found out that out of the three 5ar enzyme types, the Milano study is only investigating type 1 which happens to be the enzyme which is least influenced by finasteride. I do not understand the logic

#17

I wonder how you determined that. But not super important. The other two studies are focusing more on the receptors. The Italians primarily on neurosteroids.

#18

An email from the research lead:

“among the different isoenzymes we will analyze only the type 1. Of course also the others are interesting, but is a problem of budget available and of the number of researchers involved in our team.”

If anything, priority should be given to investigating mutations of SRD5A2, then mutations of SRD5A3, then whatever else

#19

Dr. Melcangi wrote back:

"Type 1 is also affected. The discussion the finasteride is selective for type 2 is more in the prostate. On the contrary type 1 is very expressed in nervous system. "

#20

This is why we should be donating to the Foundation even if it’s $5-10 a month like some have suggested. Think of the money people have spent on homebrew that hasn’t made a difference. Many of us still work and earn an income, we need to be doing more on the donation side of things and not take the Foundation for granted. Nobody wants to be living with this problem 20 years from now.