Genetics study: Sample collection to begin

General Discussion
#1

We are very pleased to announce that we have received final approvals for our upcoming genetics study at The University of Tampere. We can now begin collecting samples.

Earlier this year, we put a call out to patients interested in participating. If you volunteered and qualify, you will be contacted shortly with instructions on next steps.

Please be patient. Sample collection for this project is complex and will take time. You may not be contacted immediately.

We will prioritise applicants in the following order:

  • Applicants who completed our patient survey on propeciahelp will be contacted first
  • Suitable applicants with a member story on propeciahelp, or a post history predating study announcement on reddit, will be contacted second
  • Other applicants will be contacted last

If you participated in our study at Kiel, you do not need to have your sample collected. We will be extracting DNA from samples already collected at Kiel for use in Tampere.

Patient interviews

Some applicants will be required to complete an interview with our charity in order to be assessed for suitability.

These interviews will take place with our charity’s president or a patient volunteer, and will take roughly 30 minutes. You will be invited to participate if you qualify.

If you are selected for an interview, please do not delay in scheduling one. Our team are making time in their schedule for these interviews. The longer it takes to complete interviews, the longer it will take to complete this study.

Call for more applicants

Despite strong interest in this study, we are still short of our target of 150 participants.

We urgently need community support for this study to be successful.

If you have not yet applied for this study and are able to participate, please apply here. Your participation will truly make a difference.

What’s next

We are enormously grateful to the team of researchers, clinicians and volunteers supporting us.

We have been overwhelmed by the support received in the nearly two years since we announced our first study, and heartened by the progress made.

The research process takes time, but patients can be confident that thanks to your support, and the support of our team of researchers, we are on the right path.

Never has there been more demonstrable progress towards understanding and awareness of this disease and we ask you to continue supporting us as we reach another important milestone.

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#2
#3
#4

This study is only for people who took Fin/Dut?

#5

Right now, yes. Future cohorts may include SP patients.

#6

Very happy to participate. I’m in Melbourne, Australia. I might have completed the survey on my previous account “StayingAlive”, if I haven’t done it on this account. If on neither, happy to do the survey now

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#7

Great! Can you please PM me?

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#8

I got my online interview, no big deal. Such a simple thing to do for the community.

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#9

If this is still available, I’d be more than happy to provide a sample.

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#10

Thank you for your availability. However, for this study we are only recruiting post-fin patients.

#11

Update - 18/11/2023

I hope you’ll be pleased to know that we’ve confirmed the first 100 patients to participate in upcoming genetics research. We set a target of 100 confirmed by Christmas, so having this cohort ready a month early is very pleasing.

We’ve got another 17 interviews scheduled, and almost 50 waiting to be scheduled, so it looks like we’re on track for our target of 150 samples.

I’d like to give a big thanks to everyone participating and to patient volunteers for running over 40 interviews in the last week.

We’ll now shift our focus to sample collection for this cohort. We are currently working through assignment of blood collection kits with our partner Dante Labs. If you have been selected, a kit will be assigned and you will be notified via email.

Once you have been notified, you will be required to complete a clinical survey, which we will send you through email. Once this survey is completed, you’ll receive your kit in the post. If you don’t complete the survey, your kit will not be posted to you.

We anticipate the collection process to begin in the coming weeks, but please be patient as the logistics of this project are complex. We will send more detailed instructions soon.

We will still be accepting new applicants and working through interviews, but we won’t start collecting samples from our second cohort until this cohort is complete.

Thank you all for your ongoing support.

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#12

Well, right now I definitely have post-finasteride syndrome. I developed it in 2018 after a prescription for propecia. (I may have posted on accutane as well. I’ve also had issues with accutane in the past, much furtherin the past than finasteride).

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#13

To be clear, I might not have done a survey for finasteride syndrome, because the system wouldn’t let me. I unfortunately definitely have severe PFS. If I’m not eligible, for having also taken accutane in the past and having symptoms from that as well, I totally respect that, though if I am, I’d like to help any way I can. If I might be, please feel free to DM or message me. I can give more details and information, and the timeline and symptoms of PFS, if needed.

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#14

I did the interview and a family member confirmed my story, haven’t heard anything since then.

#15

We hope to start the sampling process soon.

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#16

Sample collection kicked off today.

If you were selected for our first cohort, you will have just received an email informing you. You’ll be shortly receiving an email with an invitation to complete a survey.

Please complete this survey urgently.

If you have any questions, I’m available here, via DM or at contact@pfsnetwork.org.

Thank you all for your incredible support. We’re so grateful for your participation.

5 Likes
#17

Waste of my time then to because I took Accutane 30 years ago and was a miracle for me it worked so well…Also I don’t believe there is a a dhl drop off for shipping within a 100 miles of my home lol…Only like 5 in this state I believe…

#18

If you have taken Accutane you can’t participate???

#19

Just to clarify:

  • If you took another anti-androgenic substance before you got PFS, and it didn’t trigger your crash, you are eligible
  • If you are concerned about your nearest DHL pickup point, please contact us directly. There are many local stores etc that serve as pickup points, it’s not just DHL locations.

We were able to find a suitable solution for @holyhead quickly.

1 Like
#21

hello, happy to participate if applicants are still needed. thank you.