Author Topic: POIS 2019-2020 NORD RESEARCH STUDY  (Read 12944 times)

Spartak

  • Jr. Member
  • **
  • Posts: 77
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #180 on: February 13, 2020, 08:19:40 AM »
So sad that many of us can not afford to participate.
But I am crossing fingers for the best results.
For now only heathier diet gave me minor fatigue relief, I am still unable to think, to work, to enjoy and to socialise during POIS.

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #181 on: February 13, 2020, 08:35:02 AM »
Thank you, Spartak! Very nice sentiment you express!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #182 on: February 13, 2020, 08:13:52 PM »

We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.

Hope that helps. In general, we do not need to call.

I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.

Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!


Investigator, the researchers advise to please call the number and leave a message with your contact info and a time you could be reached. That way the team will be able to give you a followup call, confirm your eligibility, and answer questions you have about the study.

TO EVERYONE,  please take the survey and, if you are eligible, sign up for a follow up call - it is very brief, just 10 minutes, and the purpose is to check your medications (which would be hard to do in an online survey) and schedule your actual lab session. The only time you would see the number (and not have a time you book for a phone appointment) would be if you tried to sign up for a spot that day - so just look for an appointment the next day.

If for whatever reason you can’t sign up for that call right away, you can take down the number and leave a message with a time you can be reached - but the best thing is to sign up for a call at the time you go through the survey.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Mushnikk

  • Newbie
  • *
  • Posts: 10
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #183 on: February 14, 2020, 03:08:33 AM »

We are only asked to call if we request a phone appointment within the hour (changed from 24 hours) , because they may not be able to accomodate our request that soon. If we pick any times in the future, they will automatically reserve the time, they will see it, and they manually confirm that they have seen it and will call.

Hope that helps. In general, we do not need to call.

I am still confused about this. After I completed the questionnaire, I saw a little calendar with available time slots for a short 10-minute phone appointment. These were all within the next few days. Once I click on a specific time slot, a little pop-up window appears and says "to book this time slot, call ()---" I called several times (it was during business hours in LA), but it's a voicemail that answers.

Now, I can't get to the mini-calendar again, because the only way to get there is to go through the survey, which we shouldn't do. But I still have the number written down. However, it's voicemail that answers. What should I do, should I just leave a message with my name and contact info, and ask them to call me when they have a chance, and if I can't answer, to call me again? Thanks for the clarification!


Investigator, the researchers advise to please call the number and leave a message with your contact info and a time you could be reached. That way the team will be able to give you a followup call, confirm your eligibility, and answer questions you have about the study.

TO EVERYONE,  please take the survey and, if you are eligible, sign up for a follow up call - it is very brief, just 10 minutes, and the purpose is to check your medications (which would be hard to do in an online survey) and schedule your actual lab session. The only time you would see the number (and not have a time you book for a phone appointment) would be if you tried to sign up for a spot that day - so just look for an appointment the next day.

If for whatever reason you can’t sign up for that call right away, you can take down the number and leave a message with a time you can be reached - but the best thing is to sign up for a call at the time you go through the survey.

Are we also supposed to fill out the survey if it's unlikely that we will travel to LA for the actual study? Is the survey itself already a data collection that is analyzed? I don't know whats being asked but it could potentially be helpful if analyzed by researchers as oppossed to the surveys here on the board analyzed by lay people. To describe say the comorbities, demographics, etc. of POIS sufferers.
« Last Edit: February 14, 2020, 12:59:04 PM by Mushnikk »

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #184 on: February 14, 2020, 01:04:51 PM »
So sad that many of us can not afford to participate.
But I am crossing fingers for the best results.
Spartak, I empathize fully with the sadness.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #185 on: February 14, 2020, 03:19:36 PM »

Are we also supposed to fill out the survey if it's unlikely that we will travel to LA for the actual study? Is the survey itself already a data collection that is analyzed? I don't know whats being asked but it could potentially be helpful if analyzed by researchers as oppossed to the surveys here on the board analyzed by lay people. To describe say the comorbities, demographics, etc. of POIS sufferers.


Mushnikk, they don’t want to discourage anyone from filling it out, but realistically it won’t do much if folks know they can’t participate due to logistics. In order to protect participants‘ confidentiality and privacy, they aren’t allowed to analyze those data for anything other than screening people for the study, and have to delete the data once they’ve determined folks eligibility and completed recruitment. And the screener is very limited in what it assesses - it is not a comprehensive survey that asks about comorbid conditions and so on.

Best,
Demo
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #186 on: February 15, 2020, 02:19:53 PM »
Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.
Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo
« Last Edit: February 15, 2020, 03:25:37 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 4766
  • All of us working together to defeat POIS!
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #187 on: February 16, 2020, 03:10:38 PM »
Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.
Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo

Update: CONGRATULATIONS, Samir, on qualifying!!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Samir

  • Full Member
  • ***
  • Posts: 143
  • POIS victim since 1988
Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #188 on: February 16, 2020, 05:39:48 PM »
Please post here when the recruiting ads are posted and please provide a link.  I am in the SF area and would drive down for any research testing.
Samir, are you caught up with the Los Angeles POIS Study info?

Please see if you qualify!

Regards,
Demo

Update: CONGRATULATIONS, Samir, on qualifying!!
Thank you!  I'm looking forward to hopefully being a part of it. :)