Research officially underway in Kiel Thursday

General Discussion
#62

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.

#63

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

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#64

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).

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#65

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.

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#66

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.

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#67

Was great meeting you man! Thanks for the update

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#68

Hello, does this mean that all samples have been collected?Surprisingly fast

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#69

Yes, all are collected

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#70

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.

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Genetics and think about it guys
#71

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!

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#72

What’s the plan for controls? Same as Baylor (circumcision patients)?

#73

Is there an estimation of how long it’ll take?

#74

We’ll be using controls who are getting a vasectomy procedure, as the tissue is identical to that taken from patients.

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#75

Which part?

#76

I was specifically referring to the “cell culturing and basic AR expression analysis” which you mentioned will take the following months, but any possible estimates including some or all of the steps involved in the research are obviously welcome.

#77

Ahh got it. That process will probably take roughly the remainder of the year. Could be a bit quicker, could be a bit longer, depending on a number of factors.

#78

Any news from the front…control sample status, AR observations, half human fin-crazed test subjects escaping captivity

**joking about the half humans (I think) but really, anything to share?

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#79

Sorry I didn’t see this until now. Half-human fin-crazed test subjects have indeed escaped - we anticipate a 28 Days Later outbreak soon.

In seriousness, there’s not much to share. We’re continuing to collect control samples and lab work is underway. Please join us at our end of year webinar and we should have more updates then.

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