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

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

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

Notable Replies

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

  2. wow… 23 and me kit asked you about using finasteride?? it’s very interesting.

  3. Hey @Ukguy82,

    We are now at a point where we can run a cursory frequency analysis to see if it’s worth continuing. Obviously if there’s some sign from the data that it’s not going to be productive or indeed it’s showing something that may be interesting to confirm by having a bigger sample pool, then we’ll share that.

    An issue of course as I’ve mentioned is that there are a large amount of single nucleotide polymorphisms in the human genome and we are only able to access a small percentage through the 23andme test result, but nonetheless these have apparently been selected for their established influence in health, so considering the low cost it is worth doing, as the chance of a clue to the predisposing factor on the genomic level is an enormous prize.

  4. Thank you axolotl and Awor for the work you put in for this projects and others!

  5. 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

Continue the discussion at forum.propeciahelp.com

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