Hi @nick.leger2314, itâs available now to members who have participated in the forum and have been experiencing persistent effects at least three months following cessation. As youâre new, a great first step would be to share your story in the member stories category. Once youâve participated a bit the system will issue you an invite via email, and youâll be able to access the survey via the bar graph icon in the top right corner of the forum on a desktop/laptop.
Ok, thank you. I submitted my 23&me raw data and will share my story in the stories category. Since I stopped finasteride 4 days ago, Iâm guessing Iâll have to wait 3 months to see if my symptoms persist before completing the survey?
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Yes, thatâs correct - PFS entails symptoms that do not resolve or develop upon cessation. Hopefully by then what you are experiencing will be behind you.
Best
Hi, very nice initiative.
What do you expect to see ? Are you looking for a specific region related to methylation of androgen receptors ? Do you have a control group ?
Thank you in advance,
Hi @slavoushka, no, that is not possible with consumer tests. This is simply to see if any single nucleotide polymorphisms occur with notable frequency amongst symptomatic patients. At that stage we would be able to consider any known involvement of the relevant gene(s). We have large volumes of control data from public sources.
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thank you for explanation !
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Olå, também sou Brasileiro. entre em contato comigo por gentileza.
Yes, Iâm wondering how many 23andMe datasets have been uploaded?
Assume not enough and that when a useful number have been uploaded that an announcement will be made. Axolotl is currently working on another extremely important project so best to leave him to that at this time.
Fyi, I donât know how many uploads there have been either.
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Greek is right. It will never be âenoughâ or too many. Just look at some GWAS on Pubmed. Some have sample sizes of 100k+. Since we are a small community, every contribution counts.
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Sure, but just as the surveys had âgoalsâ and a moving total, it may at least be useful to periodically update the community as to how many have been submitted. A web graphic isnât even important but just a sense of how many we have and how many we would need before a meaningful inference could be made.
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is there any consideration to create âcampaignsâ that speed up the participation in these projects and surveys?
some sort of monetary compensation like $100 gift card prize in a raffle system?
Maybe partner with other orgs to reduce costs if thats an issue?
i mean we can think of a lot of different things that might work if these are options. it would greatly accelerate these surveys.
imagine mods of a facebook PSS and PAS group blasting everyone with âparticipate in this survey and enter a raffle for XYZ, selecting 5 winnersâ etc
i imagine there would be 10x participation and it would save us time.
a lot of people are struggling with just ordinary bills and whatnot, it doesnt even have to be that expensive.
The problem with a monetary incentive is that it will make the data suspect. Many might sign up and participate only because of the payout, not because they have PFS.
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are there really no legitimate medical surveys done with monetary incentives?
what about this
doesnt say anything about suspect data
Was the project finished? Can I still do this?
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You already took the survey bro
Thatâs what I was talking about
Any updates on results ?
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Also interested in how this is progressing.
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A forum member notified us of a researcher interested in analyzing and publishing the data. I am attempting to establish communication with him at the moment. Regardless of the outcome, one of our staff members has volunteered to begin generating reports of different aspects of the data in the next couple months.
Participation in the survey remains an impactful contribution from those members who have yet to complete it.
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