Nuovo studio clinico in programma

As you may know, in 2014 the PFS Foundation funded a study at Northwestern University’s Feinberg School of Medicine titled “Adverse Event Reporting in Clinical Trials of Finasteride for Androgenic Alopecia: A Meta-analysis.”
Conducted by Steve Belknap, MD, that study was published in June 2015 in JAMA Dermatology and concluded that “Of 34 clinical trials, none had adequate safety reporting, 19 were partially adequate, 12 were inadequate, and 3 reported no adverse events.”
Now, Dr. Belknap has designed a followup study that he believes could identify a cure for PFS within the universe of existing prescription medications.
In the proposal for his new study, titled “Identifying Candidate Treatments for Post 5α–Reductase Inhibitor Syndrome,” here’s how Dr. Belknap describes the opportunity:
“In the work we propose here, we will identify promising candidate treatments through analysis of data for a large number of men with P5ARIs. This will be accomplished using three information sources: a large electronic database with comprehensive medical records for approximately 20,000 men; solicitation of clinical case histories from experts in the field of sexual medicine, urology, and psychiatry; a web-based crowd-sourced registry of men with P5ARIS. Our hypothesis is that the persistence of neurological and sexual adverse effects that continue even after cessation of 5α-RIs represents an instance of physiological hysteresis in which a novel quasi–stable endocrinological/gonadal/psychological state maintains, and that this state resists physiologic or pharmacologic perturbation back to the typical adult male state. We consider it highly likely that there exist treatments that would restore the normal male state and reverse the persistent neurological and sexual adverse effects that occur in approximately 1.4% of men exposed to 5α-RIs. This proposed work is therefore important and interesting for both theoretical reasons and for the practical purpose of providing relief to men afflicted with P5ARIS.”
The only barrier to Dr. Belknap starting work immediately is funding. The cost to conduct his study is $75,000.
Step one in securing those dollars is to identify a donor (or small group of donors) who will fund 50% of the project ($37,500) as a matching donation.
Then we’d open up the balance (another $37,500) to all PFS patients and their loved ones. We currently have nearly 1000 such patients on file. So if even 250 of them contributed $150 each, we’d be able to raise the full amount.
That said, please let me know asap if you’d be willing and able to contribute the full 50%, or some large portion of it. Another possibility, of course, is for you to help us find a donor who could fund all or part of the matching contribution.
If you’d like more details on Dr. Belknap’s study, I’ll be more than happy to send you the full proposal.
And of course call me any time if you have questions.
Best regards,
Philip Roberts
Patient Manager

Io ancora non capisco perché chi si occupa di studiare la pfs e ricercare una cura non tenga conto anche delle esperienze di guarigioni descritte nei forum. Chi ha le competenze mediche potrebbe individuare cosa accomuna le diverse esperienze positive e fare deduzioni importanti valide per tutti. Non ci sono i presupposti di ripetibilità, pari condizioni ecc...ecc... ma chi ne capisce di sicuro qualcosa di valido ne trarrebbe anche solo a livello di teoria. Ho come la sensazione che chi sta facendo ricerca sia distaccato dal mondo dei forum che invece é pieno di esperienze che non andrebbero perse.