Important Announcement: Two Community-Led Research Projects - Please Participate


#1

Originally published at: https://www.propeciahelp.com/genetic-community-research-project/

We are today announcing two significant community-led scientific projects, both requiring the contributions of patients suffering Post-Finasteride Syndrome and the persistent conditions caused by use of isotretinoin (accutane), dutasteride (avodart) and saw palmetto (other 5 alpha reductase inhibiting substances) as well as SSRI class antidepressants and leuprorelin (lupron). Please read on for details of these initiatives and how you can help.

Project 1: 23andme Patient Data Analysis

We are working together with the administrators of PSSD forum to conduct a Genome-wide association study(GWAS) across patient groups based on the SNP data provided with the DTC genetic testing service 23andme. We will be using high powered software and computing resources to perform a research project executed at the community level. We are hoping to identify associated SNPs, and possibly observe similarities between those suffering the respective conditions at the genomic level. It is hoped that this information will help us and our scientists better understand possible underlying genetic susceptibilities that could contribute to development of these syndromes. This is in contrast to the majority of people therapeutically using these substances who do not suffer persistent and devastating health problems following cessation. If statistical analysis of symptomatic vs control data sets reveals interesting findings, we will endeavour to work with one or more scientists to help us deepen our investigation and publish the results in a peer reviewed journal.

To achieve this, we need your help. If you already have taken a 23andMe test in the past, please click here for instructions on how to obtain your raw data. If you have not taken a 23andme test and would like to contribute your personal data to our project, please consider ordering a 23andme at-home saliva sample kit from their website. The cheaper ancestry option is sufficient as we require the raw data file, which is identical with either product offered.

Once you have downloaded and extracted the raw text file, please rename the file before submitting including your forum username and substance taken in the following way:

ForumUsername_substance_23andme.txt

Examples would be as follows:

user1_finasteride_23andme.txt

user2_accutane_23andme.txt

user3_ssri_23andme.txt

user4_sawpalmetto_23andme.txt

user5_dutasteride_23andme.txt

user6_lupron_23andme.txt

This will help us track which users have submitted data and their respective conditions.

Once your file is named appropriately, please submit your raw data file (once) via this link. By submitting your data, you consent to the use of the data for the aforementioned purposes.

Project 2: Comprehensive Symptom Survey

In conjunction with the various patient communities, we are soon going to be launching a comprehensive cross-drug survey here on propeciahelp. This will consist of a questionnaire regarding your individual condition and symptoms following use of one of the previously specified substances. We will post the link to this when it is finalised. The survey has the following aims:

  • Despite around 40 publications, the wide ranging and systemic symptom profile of PFS has not yet been accurately characterised. This is also the case for the persistent disorders caused by antidepressants and accutane. We hope to achieve this through this project.
  • While these syndromes have ostensible similarities, this will allow better data-driven analysis of the symptomatic overlap in the conditions.
  • This survey will allow phenotypic profiling of the variable conditions experienced by sufferers.
  • In possible conjunction with our 23andme GWAS, we aim to have a scientific publication following completion and analysis of an adequate volume of submissions from each of the affected groups.

We are currently implementing technology to tie this to your propeciahelp forum account, with the intention that you should be able to click through to the survey and it will link to your user profile. Members from each community have given valuable input into the survey and it has been refined over several months. However, if you have feedback that you think we may have not taken into account and would like us to consider then please send a private message to @axolotl, @awor or @ghost on the propeciahelp forum with your thoughts.

We believe this profiling is overdue and will be a highly significant milestone for our respective conditions. Your submissions of 23andme raw data and your time spent filling out the survey once it is published will be greatly appreciated and hopefully contribute to collective progress in understanding these syndromes.

We will keep you updated regarding these ongoing projects on the discussion forum.

Thank you for your ongoing support and courage


My story from accutane treatment
FINAL PROTOCOL 100% PFS REVERSAL WITH DHT THERAPY - LASTPOST
AR upregulation
Urgent - opportunity to help our community project cheaply
FDA Petition: Sexual Side Effects of Accutane
Jrums01 introduction-Dead yet still alive
Dry skin post Finasteride why why why?
Topical ketoconazole saw palmetto shampoo PFS symptoms
We need to put more pressure on the medical world
Current situation studies-wise?
Good doctor in Austin, Texas?
Urgent - opportunity to help our community project cheaply
#2

#3

I am more than willing to spend the money on the 23andme testing but I would like to know if my data will be properly used as I do not have any of the persistent conditions caused by the drugs listed above.

In fact, there has only been one other definite confirmation of another person that has what I have. It’s persistent, it happened through an enzyme inhibitor, and it responds the exact same way to ligand as PFS patients do to androgens. I would urge that you guys use my data.


#4

Is there a time frame for ordering the test? I appreciate that ideally you want the data as soon as possible, especially with the turn around in getting the info back after sending off the kit. It’s just that the price here in the U.K. has just leapt from a promotional price of 50 odd quid to £79 and as I’m cash strapped my temptation is to hold off until their next promotion. Does anyone know how often these promotions come around?


#5

In the US, they have promotions at least several times a year so if you diligently check the website every week, I wouldn’t expect it to be more than 2-3 months before you see another discount.


#6

Yeah it was 69$ for the ancestory and 139$ for the health…Now its 99$ and 199$…Might as well get the full health the way I look at it since I am going through all trouble…And hey it says it will tell you if you will get a bald spot so now you will know what would have happened to your hair if did not have pfs and fucked up your life, health and hair…My thinning spot filled in but all my hair got fried looks like someone glued pubes to your head lol.

I will be ordering this soon I suggest everyone that can afford it to do so you never know…


#7

@scotsman, good question - re timeframe it’s certainly not time sensitive to the point you need to order it today, but considering the promotion just ended and looking through my emails they dont tend to do them in the UK so often, it may be a long time before another rolls around.

@gents93, I appreciate your situation does seem to overlap but considering you are somewhat of a singular data point I would not suggest doing it right away. Rather, if the SNPs provided do indicate something we could then run yours against the dataset at that point.


#8

I paid between $300-400 for my 23andme testing back in 2012 so if you can get it for under $200 that’s a steal IMO.


#9

Thanks to everyone involved. I will certainly do my part and order the 23andme kit and participate in the survey. Everyone, let’s do this!

Edit: just ordered. 99$ plus 26$ in shipping. They offer 10% if you order multiple kits. Maybe we should order in bulk :smiley:


#10

Since the promotions are infrequent I’ve ordered mine today as well. @Northern_Star - I fleetingly thought that myself - negotiate a bulk order.


#11

Gonna speak to my parents tomorrow about ordering a test. Hopefully they respond positively and I can add my data as well soon.


#12

Love this idea. Thanks for taking the initiative and coordinating! I’m an accutane sufferer for 10+ years. I will order the 23andme testing (I was actually meaning to do this anyways!) and upload my raw data.

-For the “control group” does it make sense to have this group comprised of propecia/accutane sufferers that did not suffer persistent negative side effects? This way we can solve for genetic alterations that occur to all users of the drugs but aren’t necessarily related to the persistent negative side effects.


#13

I’ve ordered my kit. This is a great thing to contribute too.


#14

I got my raw DNA data through the company Family Tree DNA (FTDNA). Would that file suffice?


#15

Hey @orthogs, I dont think so - maybe @ghost knows a little more about what FTDNA do but I’m not sure what SNPs they check and thus if the data will be like for like enough for worthwhile analysis. However if it’s too costly to do again then please PM me and we can take a look at the data and see if we can run it with the rest somehow.


#16

I have already contacted 23andMe about that, am awaiting their reply. Will keep you guys posted.


#17

@orthogs I’ve personally had some trouble integrating non 23andMe genomes to my python program. However, what we will be using is more sophisticated. So, at this point it would be hard for us to give a solid answer til we start running them.


#18

Would you guys be comfortable with revealing how many datasets you already got and the number of sets you would like to aquire for this selfmade study?

Thanks again for this great Initiative!


#19

Mine is shipping back to 23andme next week…If you go and signup there then they emailed me code for free shipping…So that will atleast save you around 10 bucks to ship the kit to you and the shipping back is pre-paid…


#20

I plan on ordering the 23andme kit, but I’m waiting for it to go on sale first. Hopefully you’ll still be accepting data by then (probably 3-4 months from now).