No. This study is limited to PFS patients. We are convinced that PFS, PSSD and PAS are one condition. But it is currently more practical to limit the scope to PFS.
2 Likes
Lots of questions and enthusiasm. Thank you to all those who have applied over email.
I’ll have to check with the researchers, but I don’t think so. The value of research data is in the aggregate and not the individual, and given they’ll be performing highly complex analysis which likely wouldn’t make sense to most patients, I don’t think there’s much value for the individual patient either.
Researchers have asked us to prioritise patients 35yo and under because that is going to be the age of our sample population. However, please submit an application anyway. If you meet the other criteria mentioned above well, and we get a lack of suitable younger candidates, we may select older patients.
I think that’s a great idea. We’re fielding applications globally but prioritising those in Europe and think we can get enough from EU/UK. But if there are any severe North American patients or from other parts of the globe who can be sponsored, I’d be interested to see what people can contribute.
A full overview of the study can be found here: https://www.pfsnetwork.org/epigenetic-study
Researchers will be looking at:
- Chromatin structure
- Methylation in the AR regulatory region
We may also be doing a part II that performs RNA sequencing, but we’re getting this study out the door first.
9 Likes
Did Baylor provide some of their findings for this new study or do they keep those results behind closed doors because of " ethical reasons" 
just curious
1 Like
The overview says it’s building on Baylor but I would assume the first step then would be to confirm they see the same gene expression changes in the new samples that Baylor saw in theirs.
1 Like
Baylor identified WHAT genes were differentially-expressed.
This studies appears to be geared toward figuring out WHY those genes are differentially-expressed.
In this study, researchers will use state-of-the-art high throughput sequencing to investigate potential changes in the spatial organisation of chromatin. Chromatin structure is a key component in gene expression, and identifying changes could provide key insights into the pathological drivers underlying altered gene expression in Post-Finasteride Syndrome.
1 Like
Sorry that I ask as an armchair scientist again. If it worries or is the wrong direction please delete this comment!
Do you only research why Androgen Rezeptor Gen Region is over expressed or why the over expressed Androgen Rezeptor (DHT Complex) doesn’t function in promotion / enhancing all the other Androgen Gens (downstream) DYSREGULATION detacted in Baylor II?
1 Like
Also one additional question about this part, is the sample collection limited to just 25 participants? Or do you mean by this that the study can start when at least 25 samples have been collected?
1 Like
Everything that Baylor found was published - researchers wouldn’t hold back pertinent findings from publication. @Dubya_B is right - what we’re doing now is looking for the why.
We only need 25 samples for this immediate study, but the plan is to use this facility to collect more samples than can be used for future research.
5 Likes
Unfortunately, I don’t think I meet the criteria, but am fully on board with financially supporting those who do, so they can make the trip.
5 Likes
Do you have an estimate on how many studies we can run with the first batch of samples?
So on the subject of research has it been considered to try and induce PFS in a lab setting? On lab animals? Or hell, cocky PFS deniers who might do it for free meds.
2 Likes
It’s hard to say. If the samples are taken care of well they could last for years. We don’t want to take new samples every study though, so we’ll be doing our best to preserve them for multiple studies.
That’s certainly where we would like to go - an animal model - but that requires understanding the mechanisms driving PFS first. That’s what this study, and subsequent studies, will be focused on.
1 Like
Hello,
We are still looking for more volunteers for upcoming research. We’re pleased that we’ve had over 25 applications, but to ensure we are selecting the most suitable samples, we’d like to get that number up to at least 40. The sooner we get applicants organised, the sooner we can get started.
If you are interested, please email at contact@pfsnetwork.org.
Thank you all for your ongoing support.
5 Likes
I sent my application but I forgot to add a few symptoms. Mainly skin related.
Is that an issue?
Not a problem - if you want to send a follow up email to update then I can update your info.
1 Like
Please note you can now apply to participate on our website: https://www.pfsnetwork.org/donate
1 Like
There have been a few questions about the procedure and where it will be done.
Just to clarify - my information initially was incorrect. We will be taking scrotal skin, a 5mm piece, from below the base of the penis. It will not leave any scarring or cause any structural damage whatsoever.
3 Likes
Mitch, how about flirt with us a little before you ask for a piece of our nutsack? lol
3 Likes
Is the sample collection underway?