Why don't you contribute to the propeciahelp survey?

Topics related to activism.

Why don't you contribute to the propeciahelp survey?

I participated or am going to do it
34
67%
I don't feel like doing
7
14%
I think it's completely useless
4
8%
I tried but I didn't succeed
6
12%
 
Total votes: 51
Northern_Star
Posts: 66
Joined: Mon May 06, 2019 11:55 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by Northern_Star »

380 people have so far managed to circumvent the inconvenience to click on a link, read a short text about how to sign up (although many figured that out without having to read the text) and post a member story or to just politely request access to the survey. It takes five minutes (which is probably less time than has been wasted on this discussion) and soon access will be provided. Thank you to all participants!

We are very happy with the numbers for Finasteride and Antidepressants (currently 96, which we would like to push comfortably over 100). And we already know that the data will be appreciated as the admins met with a director of a large biological research center who encouraged them to get more data, particularly from patients who took ADs or Accutane. Members of this forum were present at this meeting and can confirm that.

It's simple and worthwhile. To this day, persistent side effects from these drugs are poorly described in literature. This survey will change that and provide a comprehensive data set based on scientifically validated questionnaires.
lookingforacure
Posts: 110
Joined: Sat Mar 03, 2018 10:45 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by lookingforacure »

I created an account but am confused as to what to do now. I read the instructions in the beginning of this thread, but I’m still not sure how to do what you guys would like me to do. I couldn’t find the survey on the website.
Northern_Star
Posts: 66
Joined: Mon May 06, 2019 11:55 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by Northern_Star »

Thank you for signing up and for willing to contribute to our common cause, lookingforacure!

Please post a quick member story or just ask for access in the FAQ thread! You will then receive an invite via e-mail or you can access via the bar chart icon on the upper right of the forum page).

Member story category: https://forum.propeciahelp.com/c/member-stories/20
FAQ thread: https://forum.propeciahelp.com/t/post-d ... pate/34482)

If you encounter any problems, please let me know and we will sort it out!

Thank you
Norther Star
climb
Posts: 170
Joined: Sun Dec 29, 2019 10:09 pm
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by climb »

I found the survey to be very thorough and not at all difficult to complete.
I think that everyone should be taking every opportunity to give feedback and complete surveys on their condition. We have to be proactive if we want awareness of these conditions to improve, research to be done, a treatment to be found.

I've also completed 2 other surveys that are linked to studies at Italian Universities that Anacleta has given us links to. I'd encourage everyone to complete these too.
Northern_Star
Posts: 66
Joined: Mon May 06, 2019 11:55 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by Northern_Star »

Hi folks,

a little reminder to take the survey, if you haven't yet. We are still at 96 participants from the PSSD community. We would like to push that comfortably beyond 100 participants to have a good amount of data. So, we are close but not there yet. Help us on the final push!

Thank you,
N.
climb
Posts: 170
Joined: Sun Dec 29, 2019 10:09 pm
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by climb »

To follow this up:

Every person who participates in a survey to support research is helping researchers to make progress, informing each others' theories and to stimulate the interest of other researchers to get closer to a cure.

Therefore, if you haven't already done so, it is really important to participate in the following studies:

Prof Cosci's research
Male:
https://docs.google.com/forms/d/e/1FAIp ... sp=sf_link
Female:
https://docs.google.com/forms/d/e/1FAIp ... sp=sf_link
You can also contact Dr Vargiu, who is helping Prof Cosci conduct the research:
matteo.vargiu1@stud.unifi.it

Dr. Melcangi's Research:
you can request the questionnaire from this email address: roberto.melcangi@unimi.it
Northern_Star
Posts: 66
Joined: Mon May 06, 2019 11:55 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by Northern_Star »

Hello everyone,

Our sincere thanks to everyone who has already contributed to our survey! Over 100 people from the PSSD community have participated so far, which is a really good numbers and probably the largest existing data set for PSSD patients.

We will soon no longer be accepting responses to the survey, as we have to close it up so that the data can be analyzed, and potentially published. If you are a PFS, PSSD, or PAS patient, the coming weeks are your last chance to participate in the survey, and your contribution would be immensely helpful. The more contributions we have, the more powerful the dataset is. This is one easy way that you can contribute towards solving this issue, and I urge you to please take this step. Every useful step we take is one step closer to the resolution of this. Please also encourage others in your community to participate!

See here for additional information: https://forum.propeciahelp.com/t/post-d ... pate/34482

Thank you,
N.
Post Reply

Who is online

Users browsing this forum: No registered users and 5 guests