Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

ssri
survey
accutane
finasteride

#1

Hello everyone,

Registered users, please check your email for a message titled “Invitation to participate in a Post-Drug Syndrome Survey”.

Existing members: Please see the first answer in the FAQ below if you have not received your invitation.

We are requesting the participation of patients who have suffered persistent health damage following use and discontinuation of certain drugs and substances with endocrine-disruptive properties (listed below).

If you are not currently registered at propeciahelp, please register via the “Sign up” button at the top of the page and participate in the forum to automatically receive a unique invitation. Consider starting a topic in the member stories section to introduce yourself.

This ambitious project is an unprecedented step for any patient community anywhere. It promises to generate vital data on post-drug disorders that will inform the scientific community and draw attention to this important public health issue. In addition to profiling the symptomatic condition of patients over time, it will gather further data including the impact on quality of life and patient’s satisfaction with clinical care. Contributing patients will be able to view reports generated from submitted data in the future.

As such, your time spent participating is valuable and deeply appreciated, whether you are an active participant or you are no longer visiting the forum. The more affected patients that complete the survey, the more powerful the data will be.

This is one of the most important things you can do to make a difference.

Thank you

axo

Please ask any further questions in this topic, but please first check to see if they are answered in the following FAQ or in a subsequent reply to this thread.

FAQ:

I haven’t received an email invite. I’m a regular poster or have been in the past.

Please check all email folders including your spam folder.

If you are a member who has been inactive since before the site relaunch, you may be considered a new user by our system. Please post in this thread to let a moderator know.

If you have been active since the site relaunch, please follow the steps below. If you are not a hotmail or outlook user, you can skip step one.

  1. If you are a hotmail user, follow these instructions to add forum@propeciahelp.com to your contacts.
  2. Fill in this form by entering your email in the email field and your username in the first name field. Leave the last name field blank.
  3. Post in this topic to let an administrator know you have not received an email and have completed the above step(s).

Users who have been excluded from participation in the forum for any reason, including breaches of site terms and conditions or abuse, are not eligible for the survey.

What is the aim of this survey?

It is our view that no publication to date has assessed the true scope of this important public health issue. Novel factors, such as the common experience of patients worsening severely and permanently upon withdrawal of the medication, have not been adequately described in peer reviewed literature. The clinical profiles noted in medical publications thus far are often incomplete or selected by relevance to the research interest of the investigating clinician or scientist, resulting in misrepresentations of the syndrome’s extent. FAERS data suggests young patients adversely affected by 5ARI medications are substantially less likely than older patients to have their case reported to the FDA by their physicians, despite a greater association with disability in this group. This is reflected in the common anecdotal reports from patients of clinicians expressing disbelief, attributing symptoms to psychosomatic factors or failing to attribute new diagnoses or clinical findings to use of the causal medication.

The long history of the propeciahelp forum, spanning well over a decade, is the largest collection of patient experience of what is currently termed PFS. Until now, no one has been unable to present an accessible clinical profile and data-driven exploration of this novel, rare and poorly understood syndrome. Our survey aims to clarify patient experience in easily presented data for clinicians, scientists, patients and anyone else interested in the condition. Through understanding and acknowledgement of the true scope of the problem, future research can be better directed towards etiological understanding, which can pave the way for prevention through identification and screening of novel risk factors, effective treatment options, and ultimately a cure.

Who can participate in the survey?

To participate in this survey you must be a patient suffering persistent health problems for at least three months following the use and cessation of a drug, substance, or drug/substance of a class in the following list:

  • Finasteride (Propecia, Proscar, generics)
  • Dutasteride (Avodart, Duodart, generics)
  • Isotretinoin (Accutane, Roaccutane, generics)
  • Antidepressant (various including SSRI class medications)
  • GnRH analogue such as Leuprorelin (Lupron, Eligard), Goserelin (Zoladex), Triptorelin (Decapeptyl, Gonapeptyl)
  • Androgen receptor antagonist (including Cyprotone acetate, Spironolactone, Bicalutamide, Enzalutamide, Abiraterone acetate, RU 58841)
  • Saw Palmetto extract
  • Phenolic compound supplement (including Milk Thistle, Resveratrol, Rutin, Genistein)
  • Ketoconazole
  • Minoxidil (Rogaine, generics)

Additionally, patients may participate in the survey if they are members of the forum experiencing a similar persistent symptom profile to what is currently termed PFS after the use of other drugs or alternative therapies with endocrine-disruptive properties and have received prior consent from a propeciahelp moderator or administrator. Users who have been excluded from participation in the forum for any reason, including breaches of site terms and conditions or abuse, are not eligible for the survey.

How can I participate in the survey?

You must be a registered user of the propeciahelp.com forum. We have created and integrated a system that will automatically assign you a unique invite to participate in the survey. PFS patients who are not currently registered here, or patients suffering persistent problems following use of the aforementioned drugs or substances, are welcome to register via the “Sign up” button at the top of the page. Registration and participation here requires agreeing to our Terms of Service which includes our community rules.

Once you have participated in the forum you will be issued a unique invitation by email to take part in the survey. An easy way to do this is to share your story in the member stories section and reply to a few topics. Please see the first section of this FAQ if you think you should have received an invite and have not.

How long will the survey take to complete?

Please allow at very least one hour. The survey is considerable length and detail. We believe the time investment will be worth it as it it will provide valuable data in an unprecedented manner. As such, the survey can be saved and resumed at a later date via your unique invite, so you do not need to complete it in one sitting.

Who has produced this survey and how was the survey compiled?

The survey was developed by acting administrators of propeciahelp.com, @awor and @axolotl. It is the culmination of thousands of hours of focused work. Input was gratefully received from organising members and patients from the respective communities suffering potentially overlapping persistent post-drug health damage, including the PFS, PAS, PSSD and Lupron patient communities. It was based upon detailed consideration of the many years of patient reports, shared clinical findings, and published medical literature surrounding the syndromes. Feedback was additionally received from medical professionals including those who have produced publications centered on PFS. We acknowledge the inherent shortcomings of self-reporting and purposive non-random sampling, however every effort has been made to implement validated instruments, measures and established good practice standards of surveying wherever possible while ensuring the novel nature of the conditions are represented meaningfully. Custom code was provided by non-patient volunteers.

Can I take this on my mobile phone?

This survey is not designed to be taken on a mobile device. The survey was designed to be taken on a desktop or laptop computer.

Will the survey require me to share any personally identifiable information?

No. Your answers will be linked internally to your forum account, but no personally identifiable information is requested in the survey.

What will happen to my submitted results?

The survey contains our data policy in full, and will ask for specific consents at the point of completion. This data will be compiled in aggregate form with other submissions and also as individually accessible data through an analytics platform that participants will have access to in the future. You will have the option as to whether your answers will be visibly tied to your forum account, or are included anonymously.

You have not included a symptom that I consider an important part of my post-drug condition.

We have endeavoured to be thorough in our compilation of the broad and variable symptom profile caused by these drugs and substances. As well as consultation at the design stage, we conducted a beta test that included 17 PFS patients selected for differing symptoms and severity for individual feedback on both content and user experience. All feedback was carefully considered and much of this was implemented. However, it is entirely possible we have not included very rarely reported symptoms. To account for this, most sections conclude with free text boxes in which you can add comments.

Some questions do not seem relevant to me or seem repetitive.

Not everyone’s symptomatic experience of PFS is the same. In addition to the questions tailored to our variable condition, we have incorporated established scientific instruments where possible. As such, these must be completed in their entirety to adhere to their scoring systems and yield credible results. The survey includes the following validated instruments:

  • 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)

I feel recovered from some or all of my personal PFS symptoms. Should I take the survey?

Yes, please do. The survey has multiple time frames to track changes in your condition.

I have a strongly held belief that none of these post-drug conditions are connected and therefore do not think these should be recorded together.

Submissions are recorded individually and aggregate data can be isolated by a variety of factors, including per-substance, at the analysis stage.

MrPipe, a forum user, told me to follow MrPipe’s cleansing protocol v4.0 and it [helped/worsened] my symptoms. Can I report this?

Yes, you will be able to soon. There will soon be a second survey accessible through the forum that will allow patients to report therapeutic outcomes, as well as notable responses to things not taken for therapeutic relief of their post-drug symptoms. This will also contain a reporting system for test results, and be continually editable should you have experience with a new therapy or recieve a new test result.

This was originally in the survey, and exists fully functionally. However, this had to be separated, as it was causing technical problems with the underlying software owing to the size and complexity of the survey.

I want to share what I believe PFS is, or explain why I believe my therapies worked.

Please make a forum topic for speculation or theoretical discussions. This is not suitable or relevant data for the survey.

I would like to add questions to or make changes to the questions people are being asked in the survey.

The content of the survey is finalised. You may create a poll topic in the forum for your own queries.

Can I update my submitted survey responses?

For the purposes of data integrity, no - the survey will not be editable. However, a second survey that will be accessible directly through the forum will allow the reporting of test results, therapeutic outcomes and notable responses. This was originally in the survey but had to be separated for technical reasons. This second survey will be continually editable and you may update with new notable responses, therapy outcomes or test results.

I am a patient and would be very interested to see the data from this.

Contributing patients will be able to view reports generated from the data via an interactive analytics platform, the launch of which will mark a later phase of this project.

I am a research professional and I am interested in this data. Who do I contact about this?

A: Please contact @awor and @axolotl via the contact form on our website.

I have a question not answered in this FAQ.

Please ask it by replying to this topic.


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#3

Hi everyone, excellent idea guys, providing solid data for analysis.
Do you think (@awor, @axolotl) we can post the link also on other forums or fb pages?
All the best : )


#4

Thanks @Lw77 :slightly_smiling_face:

In terms of letting patients scattered across the web know, that would of course be fantastic. However, please take note of the answer above about how patients can take part. Namely, that there’s no direct link to take the survey as invites are unique and assigned/tied internally to individual propeciahelp accounts. This is for various reasons including ensuring that only members affected by these drugs are taking it, each member is only taking it once, internal account linking to results etc. Although existing members with an account in good standing at the time of launch will be invited automatically, patients affected by the substances listed and who are not currently members here will have to sign up and participate in the forum a little, ideally by sharing their story and replying to others, before the system will issue them a unique invitation.


#5

Thank you for all of the effort and sacrifice in making things like this possible.


#6

You guys are pioneers. Thank you.


#7

This is fantastic! Thank you @axolotl / @awor


#8

Looking forward to receiving the survey!


#9

Unfortunately our test server inadvertently sent out an email titled “Invitation to participate in a survey”. Please ignore/delete this email.

The correct email with the correct survey link will be sent out very shortly. We will communicate this once it’s ready.


#10

I received a survey this morning that seems to work… is this the correct one or should I hold off until I receive another email?


#11

Hey, yes - if you have received a working invite, you are good to go :slight_smile:

We are now rolling out invites, which will be contained in an email titled “Invitation to participate in a Post-Drug Syndrome Survey”.


#12

I took the survey but FYI there was an HTTPS certificate issue that I had to bypass, which may prevent some users from accessing the site (tracking.propeciahelp.com).


#13

Thanks for letting us know @talkingant, we’ll look into that.


#14

Can’t repro this. Can you tell me what your OS and browser version are?


#15

I haven’t gotten the link yet


#16

Hi @Jm88, the invites are rolling out in stages, so we would expect you to receive an invite within the next day or so if not already. Make sure to keep checking your email and your spam folder.


#17

I received and am responding:sorrindo:


#18

Problem is the survey invitation coming to a spam folder. Some of the users might miss it.


#19

I don’t think there’s anything we can do about that, is there?


#20

We have done everything we can to maximize deliverability of our transactional email messages. However, since our name contains “propecia” and the email messages some links, unfortunately our mail is sometimes classified as spam, regardless.

To avoid our messages landing in your spam folder, please add this email address to your contacts:

forum@propeciahelp.com

Thanks