Author Topic: POIS 2023 NORD RESEARCH STUDY  (Read 79000 times)

demografx

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #540 on: October 30, 2022, 11:00:11 AM »
The new POIS paper will be published in the Journal of Sexual Medicine


An official journal of the International Society
for Sexual Medicine (ISSM)


For more info on ISSM:
https://www.issm.info/members/join-us
« Last Edit: November 05, 2022, 12:56:24 AM 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

Muon

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #541 on: October 30, 2022, 11:32:13 AM »
It’s nice that they have reported Pre-ejaculate as POIS trigger in the patient. First article that mentioned it.
« Last Edit: November 05, 2022, 12:55:22 AM by demografx »

demografx

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Re: POIS 2022 NORD RESEARCH STUDY
« Reply #542 on: October 30, 2022, 06:33:52 PM »

The new POIS paper will be published in The Journal of Sexual Medicine


An official journal of the International Society
for Sexual Medicine (ISSM)


For more info on ISSM:
https://www.issm.info/members/join-us


For more info on The
Journal of Sexual Medicine:

https://www.jsm.jsexmed.org/
« Last Edit: October 30, 2022, 06:38:13 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

Limejuice

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Re: POIS 2022-3 NORD RESEARCH STUDY
« Reply #543 on: November 04, 2022, 01:28:48 PM »

Question - has this drug been used by other POISers (or a drug of similar class)?  A forum search didn't find anything.


Certainly none has reported about flibanserin, still many similar drugs have been used by members. You could check this post for details:
https://poiscenter.com/forums/index.php?topic=4061.msg43858#msg43858



Thanks, Progecitor!

Thank you Progecitor
« Last Edit: November 05, 2022, 12:51:16 AM by demografx »

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #544 on: November 04, 2022, 07:07:10 PM »
(NORD - National Organization for Rare Disorders) is the supervising organization for our

======================================================
2023 POIS Research Study
======================================================

funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0


Work has already begun. You may have noticed my sending papers to them, correspondence, in-person meetings, etc. But realistically POISer recruitment, analysis, writeups, NORD evaluations will continue into 2023.
« Last Edit: January 05, 2023, 11:12:31 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

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #545 on: November 05, 2022, 03:41:34 PM »


Dr. Tierney Lorenz,
our PI (Primary
POIS Investigator)



Dr. Nicole Prause,
our POIS co-Investigator)


I just want you all to know that after 15 years here (NSF & POISCenter), I have finally found what I was looking for: outside-expertise with a dedicated, POIS-empathetic research team that “all very much want this to happen” (in their own words). Including their guidance to see us all the way through to successful POIS treatment.

Yours,
Demo
« Last Edit: January 21, 2023, 05:35:59 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

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #546 on: January 15, 2023, 06:58:06 PM »
Cross-posted from NORD News


Anything on the [2023 POIS Research] study?


Thank you, Journey.

From the 2023 POIS Study Research Team:
“We are working with Dr. Prause and UCLA (University of California, Los Angeles) to determine how to move the study to UCLA.

Currently, we met with and are working with the UCLA institutional review board (IRB) to figure out how to best approach human subject protections, particularly given we are collaborating across multiple institutions (UCLA and University of Nebraska - Lincoln [UN-L] ).

We are hopeful that moving the study to UCLA will make it more accessible to POIS Research Study participants and will provide additional support moving forward.”

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

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #547 on: January 21, 2023, 05:47:18 PM »
For those of you who are not aware that our original scope of study for POIS Research in 2023 has expanded significantly
~Demo~

[January 21, 2023 EDIT:]


(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2023 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0

Quote from: demografx
VERY EXCITING 2023 POIS RESEARCH NEWS!

“Hey Demo,

My name's Eric and I've been a member of the forum for a while now.  I only learned about the UNL [NORD] study recently and decided to investigate.  After learning of a few deficiencies as a result of limited funding (they weren't going to look into delayed onset symptoms and other autoimmune/inflammatory biomarkers) I decided to get in contact with them to see how much funding they would require to expand their study to cover the things I thought were important.

I asked them to give me numbers for how much they would need for the basic additions I requested along with any other ones they could think of for their "dream" study.  They came back to me with some ideas which I thought were good.

I and my family's foundation have decided to fully fund the "dream" study!  Before I gave them the go ahead, I had asked Quantum if he knew any medical researchers in the forum I could contact.  That's why I'd gotten in touch with him prior.  Thanks again Quantum! 

I also reached out to an autoimmune researcher friend of mine for suggested expansions to the study and she gave me a few that Tierney and Nicole hadn't thought of so those might be added too.

The study will be tracking more inflammatory biomarkers, including delayed onset people, adding research assistants, larger sample size, etc.  I've been asked not to share their hypotheses or the study proposal so I can't share those details.  Suffice it to say, the study should be more comprehensive than before and hopefully allow for some real progress.

I'm personally deeply motivated to increase visibility and research for POIS (since it's taken away a lot of joy from my life).  This study seems like a great start.

Thanks for all your hard work organizing this study!  The funding is almost the easy part, I think what you did was incredible.  Hope you keep up your good work!

Thanks,
Eric”

Thank you, Eric!
Best wishes!
Demo
« Last Edit: January 21, 2023, 05:51:41 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

RD

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #548 on: January 23, 2023, 02:17:11 PM »
This forum is very new to me, but pois is not, unfortunately. I suppose I am trying to find out the availability of the research study and if it has space for someone that has time to commit to such a service. Secondly, I am still learning about pois, treatments, and experiences. Thank you. - R

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #549 on: January 23, 2023, 04:43:52 PM »
This forum is very new to me, but pois is not, unfortunately. I suppose I am trying to find out the availability of the research study and if it has space for someone that has time to commit to such a service. Secondly, I am still learning about pois, treatments, and experiences. Thank you. - R

RD, welcome to POISCenter.

If you are referring to volunteering for NORD’s 2023 POIS Research Study, we will be posting announcements asking for volunteers. I don’t know exactly when. We will also be probably sending out emails, and you are on the list since you registered here.

ps - RD, were you at the Naked Science Forum? Your username seems familiar.
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

RD

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #550 on: January 23, 2023, 06:01:36 PM »
Thank you, Demografx. I am actually speaking of the study being conducted at The University of Nebraska / Lincoln. Sorry for leaving that out. Naked science wasn't me, I only do science with clothes on these days. pois being considered. Gotta have a laugh, right?! Anyway, not me. There is a lot of information on this forum, has this been helpful for you?

demografx

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #551 on: January 23, 2023, 06:44:17 PM »

Thank you, Demografx. I am actually speaking of the study being conducted at The University of Nebraska / Lincoln.


Yes, that is exactly what I was referring to. It is now UNL & UCLA. I am the POISCenter coordinator with Dr. Lorenz and Dr Prause, who are directing the study.
https://poiscenter.com/forums/index.php?topic=3006.0
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

RD

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Re: POIS 2023 NORD RESEARCH STUDY
« Reply #552 on: January 23, 2023, 07:08:16 PM »
Thank you very much. Keep me posted as I could be in either place at any time for any length stay. Oddly, those are two of the three areas I frequent on a regular basis.