It’s part of their health report
oh is that the more expensive one? i got the one where it tells you your nationality
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Yeah I got it as a gift before pfs. Literally took fun while waiting for my results
hello
I am axolotl, one of the administrators of this forum.
I am writing to give everyone an update regarding our survey project. I am pleased to say the survey is now nearing completion. It has been a substantial undertaking and hundreds of hours of work on both the content and technical fronts. Thank you to the many who contributed to this effort in any way. Thank you also to the PFS, PAS and PSSD patients and community leaders who offered their input.
We will be running a beta test of the survey by early next week. This will only include pre-selected users who have now been notified. Our thanks to all who have confirmed participation. This early beta run is a technical exercise with two main objectives. The first is to test the integration of the survey system with the forum. A good person - let’s call them Papyrus - has been helping us implement a system that will automatically manage the unique survey invites for members of the forum and keep track of who has and hasn’t been assigned one. The second objective is to receive feedback on the user experience, including from those for whom English is a second language.
After this is test is completed and any changes we need to incorporate are addressed, we’ll announce the survey’s launch. You’ll all receive a mail with a unique invite which will automatically be tied to your username and email, so the system will know you’ve been invited. All going well, we’re hoping for this to be in the next few weeks.
The survey aims to generate important and presentable data on Post-Finasteride Syndrome and the other possibly related post-drug/substance disorders. Your participation will be valuable and greatly appreciated.
Thank you
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Just uploaded my data, got it today.
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I just ordered my kit and will submit my data file as soon as possible.
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Are both AncestryDNA and 23 and me basically the same ?
Or would 23 and me be better for this research ?
Hi Mark, the project requires like-for-like SNP set, and so mixing the provider of the tests is not possible, and so it does have to be the 23 and me ancestry pack. Its on offer today for cyber Monday, and so today would be the best day to buy if you can.
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I’ve ordered from the 23 and me I should have the kit by the end of the week.
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Maybe the PFS foundation could send out an email encouraging all PFS patients to consider getting this test.
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Have u noticed they removed the stickies over at solve?
That site seems to be dead now.
Yes someone removed the sticky section and all that stuff about the funding of the studies claiming an announcement from the foundation soon.
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Great to see more people getting involved in this project, here.
This is our best shot: help ourselves out of this mess.
This is our route to freedom.
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Do we have enough genomes yet? Mines being analyzed
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lol hopefully it is that easy…
We have about 40 so far. We should have at least 50 to get anywhere near what could be called statistical significance (GWAS studies typically run hundreds or even many thousands of genomes). I am hoping that we will get by with less because our problem is presumably rare.
I will invest some time over the upcoming holiday season to see if we can already detect a signal. The holiday special is still going on until DEC 25 for incredible $69. This would truly be money well spent. @axolotl and myself had a meeting with a scientist a week ago. He was of the opinion that what we are doing is a great project and he is looking forward to seeing our results.
The ultimate objective of what we are doing here is to find genes which are implicated in predisposing us to PFS. This information can then be used to develop an animal model. We need such a model to help us evaluate therapeutic approaches, without endangering patients. My intention is to do a preliminary assessment and produce some pilot data. If it looks good, I then intend to hand over the project to a scientist specialized in GWAS studies.
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Is the 40 just PFS genomes?
Uploaded from users on this site, so we probably have some isotretinoin and pssd users too. Additionally, I have 13 pssd genomes from the pssd forum admin. I will need to check it out more closely in the next weeks.
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