Research updates & call for more genetics study volunteers

General Discussion
#1

Hello all,

We hope you are doing the best you can. A quick update on the current status of research being organised by PFS Network.

Kiel study

The latest from Kiel is that all patient samples are now in cell culturing. We’ve also received the first five control samples to the lab, which is ahead of schedule and very exciting. We expect to receive the remaining control samples in August or early September.

This puts us on track to have at least 4 aliquots of all samples in liquid nitrogen by October, at which point we can begin sequencing. As we are using the same ethics approval for our study at Tampere, it also means we can extract DNA from 12 patients to use for that project.

Tampere study

All ethics approval applications have now been submitted, and now we wait. We hope this is a relatively painless and quick approval process.

We are a tick under €150,000 of funds raised towards our €200,000 target. A massive thank you to every patient or loved one who has contributed.

Call for more genetics study volunteers

We are currently sitting at 118 volunteers for this study, but importantly, only 87 volunteers are immediately usable as they either completed our patient survey or have a propeciahelp member story older than six months.

We strongly encourage anyone who hasn’t already to please apply following the link below. We are particularly interested in twins or brothers.

Link to application form: https://forms.gle/P3KhvSqEdpwjRHG5A

Once we have ethics approval, we will start reaching out to applicants about next steps. Although we will need the full €200,000 to complete the study, we can begin without the full amount.

If you have any questions, as always, please reach out.

19 Likes
#2

Brilliant progress. Thanks so much Mitch!

7 Likes
#3

A bit suprised here. I applied for the study but have not been contacted. Still willing to give my blood though.

#4

The fact that you seem to give importance to the member story being older than six months seems to point towards it being more of a control mechanism for legitimate reports, rather than due to any specific knowledge or information about the case or which side effects are/were present.

If that’s the case, than I probably should mention that while i didn’t finish and submit the patient survey, I started it before it vanished. Given that the form seemed to save your “progress” so you could continue it later, you might find my half-finished survey somewhere in your data and be able to use it as evidence that i actually have PFS.

I stated in the volunteer form that I hadn’t finished the survey so I suppose I’m likely not included in those 87 that are “immediately usable”.

#5

Read Again. From my understanding they have not started contacting anyone yet.

#6

I didn’t get any confirmation or other reply either. But if you sent the mail then they have your application.

#7

Just to clarify, nobody has been contacted after they applied. We unfortunately don’t have the manpower to reply to every application and said this in our announcement emails.

There’s no need to apply multiple times.

2 Likes
#8

OK, cool. Sounded like it was already finished

#9

Thanks Mitch!