Are there any Post-Accutane Syndrome Foundations or Associations

General Discussion
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#1

Hi guys,

I am new here.
I was looking for any Post-Accutane Syndrome Foundations or Associations where I can donate for PAS research.
I heard there is a Foundation for PFS, but couldn’t find anything similar for PAS. Are there no parent’s groups or patient groups?

Thanks for your help!

#2

Hi Waytocure,

Welcome to our forum! Please introduce yourself in our member story forum, so that we can learn about you, your story and your symptoms.

Your willingness to donate and help with research is highly appreciated. Unfortunately, I am not aware of any PAS Foundations. But you may have noticed that the staff of this forum strongly suspects that PFS, PAS, PSSD etc. share an identical mechanism as these drugs share antiandrogenic properties. This is explained in detail here: https://www.propeciahelp.com/post-androgen-deprivation-syndrome-abstract/

Hence, we believe the different communities should collaborate, pool their resources and work on research that benefits all of us. We are stronger united as individually our communities, unfortunately, are too small with limited resources. The staff is currently working hard in the background to get research going. So, stick around and eventually you may find that we have a cause that is worth donating for.

Meanwhile, you could support our efforts to raise awareness and initiate research by completing our survey. The survey is designed to create systematic data with regard to the symptomatoly of PAS, PFS, PSSD etc. and is based on scientifically validated questionnaires. The data we have so far has already received interest from scientists. Unfortunately, participation from the PAS community has been lacking so far. So you could make a real difference here! Please find more information here: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

Thank you and good luck,
N.

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#3

The only donable site I know of is rxisk. they don’t do treatment research. they promise $ 67,000 for the person who has received treatment.

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#4

Hi Northern Star,

thanks for the hearty welcome and your inspiring words.

That sounds great. You are absolutely right, we have to unite here in this forum to make a real impact. Maybe I can motivate more PASlers to join the efforts in this forum if I knew where to find them. |

You said that you are hard-working on a research project for PAS, PFS and PSSD. That is evoking my interest. What kind of research project is this and how far are you with that?

About the questionnaire, great that you are collecting data. I think this is an important step!
You said it was scientifically validated. Who was validating the test? Is there any study on the test validation that I can dive into?

Let’s fight together.

Warmest regards!

#5

Thanks a lot for the link. Nice that someone is caring about PAS too :slight_smile:
But a treatment would not be reached by one person. And 67.000 for a pharma company would be way to low to even think about it. Correct me if I am wrong.

#6

Hi Waytocure,

to be clear. The survey itself is not scientifically validated, but it incorporates many questionnaires that are scientifically validated and commonly used:

  • Rapid Disability Rating Scale (RDRS2)
  • Likert-type scale
  • The International Index of Erectile Function (IIEF)
  • The Female Sexual Function Index (FSFI)
  • RAND-36 (SF-36)
  • Short Assessment of Patient Satisfaction (SAPS)
  • Depression Anxiety Stress Scale (DASS-21)

With regard to research, one thing we would like to do, and that was suggested independently by two expert scientists, is next-generation genome sequencing to uncover the genomic patterns that make us susceptible to get this condition in the first place. It would also allow to check, whether PFS, PSSD and PAS patients indeed have a common genomic footprint. We are working on getting scientists with relevant expertise and funding organised. We were on a good way, when the global Covid-19 pandemic got into the way. Unfortunately, it’s also a bit of a chicken-egg problem, as scientists may attract funding and existing funding may attract scientists.

I hope that helps.

N.

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#7

Thank you, Northern Star, for explaining in depth what influenced the questionnaire, that is indeed increasing my motivation to spend that hour on completing the survey.

Great to hear that you already had contact with scientists! That sounds encouraging.
Will you go for whole-genome sequencing or not consider the exons to save funding?
I heard that the Baylor’s study part II would include genetic results and that it should be published within the next months. Will you wait for the results to complete the study design or do it independently?
Will your study include PAS victims and how many affected individuals do you need from each group? Will you use a control group?
Also, I heard that an Italien PFS group is working on a genetic study with PFS and PSSD, do you know anything about it?

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#8

i agree

#9

Hi Waytocure,

these are a lot of questions and I don’t have the lead on this, so I cannot answer everything. Often the answer is “it depends” (on money, suggestions by / preferences of the scientists we hope to recruit, other resources) as things are still in progress and we are still quite a bit away from going down to the details.

  • We would prefer to go for WGS, but may consider other options depending on costs/funding.
  • Baylor has been “Just a few months away” for some years now.
  • We would prefer to include all post-drug groups. This depends on costs/funding, however. For costs reasons it is likely that we will start with one group. If the study yields interesting results, we could then add the other groups as we strongly believe there is a shared mechanism. Of course, there needs to be an element of control (a control group or existing data that serves the same purpose).
  • I have literally only heard what you said, that an Italian group is working on a genetic study. I don’t know more about is, but I believe there is communication between some of our staff and this group.

Do you have any background in research/science?

It is also worth noting that awareness is still a problem in science, the medical community and the broader public. Hence, in addition to our attempts to get research going, we are also working on awareness projects. More awareness will in turn help with getting more research going. Everyone is encouraged to help by participating in our awareness projects and by reporting their symptoms to the authorities.

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#10

I am not a researcher, but I have a science background and have worked together with researchers in the past, initiating several research projects in the tech and health space.

#11

Please fill out the survey and call for a ban https://www.gov.uk/government/consultations/isotretinoin-call-for-information-to-be-considered-as-part-of-an-expert-review

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