ıt not realıstıc to hope non pfs people to pay 3000 dollar to partıpıcate for nothıng.
I dont know man ,a healthy man never pay 3000 dollar for a rare and unbelıeved dıaese
edlt: ı mean 4500 dollar. Lol.
Everything in the World works against us
Oh right, I wasn’t aware that people had to pay to take part in the studies; I thought participants were being paid.
I don’t think I’m eligible (as I no longer have documentation that I took the poison), but I’d be very happy to make contributions towards others taking part in the studies. I’m sure others would too. I wonder if anyone with links to the Foundation, or any forum administrators, could advise on the best way we could do this? Maybe we could set up a separate account linked to the Foundation?
In my opinion, everyone’s focus should be on ensuring these studies have enough people. My understanding is that once we have an understanding of what causes PFS, we can finally start making an informed search for treatments.
So is this $4500 element the bottleneck here? It would be extremely helpful to know what the bottleneck is, so that everyone knows what we need to work on. If we have the specific information then we can move this forward. Can anyone with authority give confirmation on where the specific bottlenecks lie for advancing these studies.
Sorry for any misunderstanding the $4500 quoted to me as the personal cost was for the study at Baylor college of medicine not the study at BWH, I have not been in contact with them, my mistake.
That’s still a concern though, as it’s a really important study. I’m not sure if anyone on the forum is involved with the Foundation and the studies? If not I’ll try and contact the researchers directly to see how they are doing for participants, as if money is stopping people then we need to address this.
ım not trying to demorılıze anyone just ım wonderıng, tell me how/why does a healthy guy who takes fınasterıde wıthout any sıde effects partıpıcate and pay 4500 $ for thıs? Who can do thıs man? I lost my hope about baylor study 
i was under the impression everyone who went in to do these tests would be compensated upto some $800 odd dollars for loss of earnings etc and the tests are completely free,i thought this was common knowledge???
Brigham and Women’s Hospital offers compensation. Baylor does not - they charge patients for participating.
what is the difference between this 2 Places??are the Studies different??i dont get it
right i see,no wonder they cant get anyone in to do tests lol…
The studies are testing different variables. However, there is some overlap with the biopsies and epigenetic tests.
IMO baylor dont belıeve the pfs thats why they ask some money ın return for wastıng theırr tıme.
I know that this is frustrating, but the lack of remuneration has nothing to do with whether PFS is believed to be real. It is undoubtedly the product of the grant size, which covers the cost of the biopsy, the genetic analysis, and two components of the blood work. Dr. Khera, the principal investigator, sees PFS patients quite a bit. AGAIN, the control group (n= 25) consists of patients coming in for circumcision and thus I believe they are not out any extra money.
They are both vital pieces of the jigsaw. We need to collect money for covering potential Baylor participant’s costs so we can get this one moving.
ı have saıd same thıng already but nobody lısten.
A few days ago I emailed the Baylor study to ask how the study was going (I contacted the person listed on the advert for the study on the PFS Foundation website). I asked if there was a shortage of participants, and if so whether we could look into providing donations to cover for people’s costs. However, I’ve not heard anything back.
I’m happy to email the PFS Foundation, but does anyone on this forum have this information - e.g. through links to the study or to the Foundation? If the study is behind because costs are a problem, then we really need to address this.
ım so sad nowadays so apologıze ıf my englısh wrong now ı cant concantrate. I sent message foundatıon one week ago . They saıd we dont know how many people need for baylor but we are sure everythıng ıs progressıng as scheduled
but problem ıs how can they sure such lıke thıs ıf they dont know how many people need baylor study.
Why don’t they accept people who have taken generic finasteride as participants? Or do they? The ads seem to require Propecia users.
I just got off the phone with Allen (BWH contact for study). He said they take people who took Propecia or Finasteride.