I don’t think there’s much use in dealing in what-ifs at this point. If it turns out chromatin structure is affected, we’ll have another clue as to what’s going on.
Our goal has always been to get to mechanistic understanding first. Once that happens, we’ll at least have an idea of what’s happening, and hopefully a therapeutic target.
why focus on an extreme doom scenario that assumes science and technology doesnt progress further?
too many anecdotes of people getting better, even momentarily, from taking 5ari’s to assume theres no solution available either now or in the future
Hi, I have a question out of curiosity which is probably not relevant. Is there a base with all the differently expressed genes from Baylor study released/saved for public/researcher view or the data is only available in the publication?
I believe the data is only available in the publication.
I was wondering whether this base would be useful for the Kiel or Melcangi study or for some future analysis when the technology or knowledge progresses. But still I don’t have enough knowledge to tell. Though I feel like such a small community would benefit from high levels of transparency and sort of open source approach.
It’s not easy or practical to share massive datasets like that unfortunately. Plus there’s a requirement for patients to consent having their data shared, which didn’t happen with Baylor, and all the issues with GDPR, etc.
Plus, a lot of institutions are going to very guarded about who they share their data with.
Does this mean there can be no effort to replicate the Baylor results with the new samples before performing new analyses?
I’m not sure what you mean sorry. This study was never meant to replicate the results of Baylor.
Given that this latest study is using a new set of samples, I think it would be interesting to see whether they show a similar pattern of altered gene expression to what was found in the Baylor samples. This would strengthen the case made by Baylor and may also give higher confidence that the new set of samples are representative of the same phenomenon.
However, I don’t know how much effort would be required to do this (in particular, whether significant additional lab work would be required to obtain the data). If the effort would be large, I would certainly understand why you are prioritizing new and different analyses.
i see what you mean
the key thing here is these studies aren’t meant to be fancy with integrity and peer review with high sample size etc.
our goal is to take actionable insights and build on top of it as quickly as possible to get the fundamentals down and work all the way towards a cure
similar to how companies conduct research vs public institutions
There’s no reason to suspect that samples in the Kiel study would be representative of a different condition from Baylor. Regardless, to assuage your concerns:
Separate studies using separate groups of patients have already turned up very similar findings. See penile vascular abnormalities in Khera 2020 and Carlisle 2022. Also see alterations in neurosteroids in Caruso 2015 & Melcangi 2017 and differential expression of neurosteroid-involved genes in Howell 2021, aka Baylor.
Additionally, the Kiel study will measure androgen receptor (AR) expression, which two separate studies (Di Loreto 2014 and Howell 2021, aka Baylor) have shown to be overexpressed in PFS patients. So, we will have that point of comparison.
Lastly, if that occurred one would expect there to be intragroup sample differences in the Kiel study, as it would be implausible that all twelve samples were somehow representative of the same different condition.
So again, it’s basically impossible that could happen, and we would have several indicators if so. Given the constrained resources our community has and our shared interest of getting out of this as quickly as possible, it’s very important we shift focus from the what (Baylor, some current studies) to the why (Kiel).
These are excellent points.
I do think it’s significant to have some common biomarker, given the difficulty of diagnosing the condition. AR overexpression would seem to fit the bill.
Last week, we successfully completed the collection of patient samples for the Kiel study. So far everything has worked out smoothly.
Thanks to everyone involved, particularly to the patients who volunteered to provide a sample! It was a pleasure to meet four of you here. We have some bright and committed individuals in our community.
Was great meeting you man! Thanks for the update
Hello, does this mean that all samples have been collected?Surprisingly fast
Yes, all are collected
Thanks again to all patients who participated in this important study. All samples are safely in the lab, where cell culturing and basic AR expression analysis has begun. This process will take up most of the coming months.
Now we move onto collection of control samples.
Awesome , we have to celebrate this by “DONATING”! Let’s donate guys, We don’t wanna wait anymore! We need a solution, never ever stopping donation!
What’s the plan for controls? Same as Baylor (circumcision patients)?
Is there an estimation of how long it’ll take?