Research officially underway in Kiel Thursday

General Discussion
#21

Not to sound rude, but you’re acting as if you’re the one who paved the way. In 2013, two genetic studies were already launched. --granted, one came from Brigham and Women’s, which has strangely started its own PFS-denial campaign. (that’s a whole other story)

Since genetic studies were already underway a decade ago, it’s hard to get excited about this, especially since you didn’t even mention them. It’s as if they never happened to begin with. You at least could’ve informed us if this study builds on that research, or if it has its own investigative framework.

#22

It’s been mentioned here and elsewhere, quite extensively, that this study builds on the results from Baylor. We’ve acknowledged their work and Prof. Khera has been involved with the planning of this study.

Apologies if this was unclear.

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#23

He literally gives credit in the OP what are you talking about

And this study builds on top of baylor’s results. What more are you expecting?

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#24

Mitch personally contributed tens of thousands to make this happen. The post gives thanks to patients, volunteers etc and mentions building on previous work. This is what you choose to focus on? Amazing priorities. Biblical levels of Karendom.

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#25

So have many others, ten years ago. That’s why I was baffled to see this:

Since this is almost exactly where we were ten years ago. Only in 2013, two genetic studies were announced, not just one. And since he didn’t acknowledged any of them, I assumed the methodology of the Kiel study didn’t consider their existence.

#26

Where?

#27

If we’re not much further along than we were 10 years ago then perhaps that’s because a big cohort of the patient community flipped out when asked to fill out a simple survey to gather data on the condition and constantly complained without doing anything. Maybe that’s why.

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#28

Not my characterization. And nix the “without doing anything” part.

#29

Not going to have this thread derailed so patients can bemoan the state of progress and argue. Please, both sides, stop.

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#30

Agreed

#31

Great work guys. Big thank you to everybody who made this happen.

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#32

The patients in the study, the number of doses they took, the severity of their symptoms, I was a very severe case, and I wanted to participate in the study

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#33

Me too I volunteered as well and i have every symptom in the book as well as getting progressively worse, not better!!! (as things stand) one of the 1st people to take propecia on the planet who developed pfs within weeks and is still around to this day. So im very surprised but we don’t make the decisions. My tissue has a unique story to tell in terms of what has happened after 20 plus years with repeated exposure but as said were not choosing. We have to be confident that they get the full picture from the selected samples regardless of our personal views

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#34

Sorry if this is a ‘duh’ question but are there control samples being collected?

#35

In an ideal world @LazarusRy we would have selected you, absolutely. But researchers advised us to select younger patients where possible and also those who took the drug for less than a year.

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#36

Yes, absolutely, this is a case controlled study.

#37

Are the controls folks who took fin and don’t report symptoms or ones that never took fin or a mix?

#38

They’ve never taken finasteride. In this study, we want to demonstrate the differences in tissue that is affected vs not.

#39

Sorry having a petty moment. I have many with this condition. Apologies

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#40

Oh wasn’t perceived that way at all. Just letting you know why we selected others.

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