Author Topic: POIS 2021-2022 NORD RESEARCH STUDY  (Read 47779 times)

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #100 on: October 01, 2019, 08:28:12 PM »
Some people (but very few) here wonder why we don’t just crowdfund donation$ and then hire our own POIS researcher instead of using an intermediary like NORD? One answer is that NORD does all the accounting/bookkeeping/$$$ fundraising donor collection, organization and disbursement of funds, a mini-nightmare for a small group like ours. Then they do massive promotion to a huge international database and PR network to screen for and find medically-qualified-for-POIS researchers. Then, lending great CREDIBILITY to the process (for donors & researchers alike) with a very well-known and highly respected name in the field of medical research of rare disorders, e.g., NORD.

And to me, one of the most critical factors is having an “oversight” team like NORD’s MAC (see below), virtually impossible to assemble all alone by a small group such as ours.

:) MAC FAQ :)

Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors POIS research progress & sends us periodic updates?

A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.

The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS. They are:


Marshall Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences

Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System

Matthias Baumgartner, Prof Dr med
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Preston W. Campbell, III, MD
President and Chief Executive Officer
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine

Gregory M. Enns, MB, ChB
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine

Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC

James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and Translational Science and Training
Associate Dean, Clinical and Translational Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center

James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine

Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair and Professor in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute

James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School

Mary Jean Sawey, PhD
VP, Medical Director
Scientific Services
TRIO, an FCB Health Network Company

Susan Winter, MD
Clinical Professor, Pediatrics, UCSF
Clinical Geneticist, Genetic Medicine and Metabolism, Valley Children’s Hospital

Doris T. Zallen, PhD
Professor Emerita of Science and Technology
Studies and Humanities
Virginia Tech University
« Last Edit: October 26, 2019, 02:10:16 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 2019-2020 NORD RESEARCH STUDY
« Reply #101 on: October 25, 2019, 06:47:17 PM »
Great Research News!

From:        Dr. Nicole Prause
cc:             Dr. Tierney Lorenz
Subject:    Scientists, start your engines!


Hi Demo,

We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)

Thank you for your patience and have a good weekend!

Nicole Prause, Ph.D.


« Last Edit: October 25, 2019, 09:00:48 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

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #102 on: October 25, 2019, 07:00:40 PM »
Demo have you notified the team about the recent paper?
Hopefully it might help them allocate their recourses somewhere more useful.
Thanks you.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #103 on: October 25, 2019, 07:17:40 PM »
Yes! Thanks, Nas!
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 2019-2020 NORD RESEARCH STUDY
« Reply #104 on: October 25, 2019, 07:19:16 PM »
Great Research News!

From:        Dr. Nicole Prause
cc:             Dr. Tierney Lorenz
Subject:    Scientists, start your engines!


Hi Demo,

We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)

Thank you for your patience and have a good weekend!

Nicole Prause, Ph.D.


Yayyyy!


For those of you who are new, Daveman & I  together co-founded POISCenter.com
« Last Edit: October 26, 2019, 01:13:23 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

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #105 on: October 25, 2019, 09:38:07 PM »

From:          Dr. Tierney Lorenz
cc:               Dr. Nicole Prause
Subject:      Re: Scientists, start your engines!

Thanks Demo and thanks again to the whole community for your continued patience and support!

Cheers,

TKL
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 2019-2020 NORD RESEARCH STUDY
« Reply #106 on: October 25, 2019, 09:57:24 PM »
The first step in our new, major POIS Research is working with Dr. Nicole Prause’s sexual biotechnology company, Liberos LLC, in Los Angeles

http://www.liberoscenter.com/

- - with close direction, co-ordination and follow up with Dr Tierney Lorenz at the University of Nebraska - Lincoln.

My role is Research Intermediary - -  between POISCenter.com and the UNL/Liberos Research Team - - And between POISCenter & NORD. Similar to the last 10 years.
Best POIS-breakthrough wishes to us all!
Demo
« Last Edit: October 26, 2019, 01:44:41 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

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #107 on: October 26, 2019, 06:46:46 AM »
Please keep in mind: POIS research direction and methodology is strictly between the Research Investigators (Drs. Lorenz & Prause) and NORD’s MAC:

https://tinyurl.com/yxjf8wjo

Contractually, we POISers do *not* have any control over *how* they choose to study POIS. NORD’s medical and scientific objectivity is one big reason we funded them in the first place.
« Last Edit: October 26, 2019, 01:41:10 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

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #108 on: October 26, 2019, 08:03:41 AM »
Do we have the right to be updated on research progress or do we have to wait for the whole thing to finish in order to see the results.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #109 on: October 26, 2019, 01:11:42 PM »
Regular progress updates from MAC are sent to me, which I will post here. There is a periodic public summary, for us, and a private, much-more-detailed writeup at the same time, the latter strictly for MAC’s confidential, in-depth evaluation of POIS research progress. And our researchers are only paid (progress payments) when pre-established goals (by MAC) are met. A wonderfully rigorous process.

Again, who is MAC?
https://tinyurl.com/yxjf8wjo
« Last Edit: October 26, 2019, 01:40:30 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 2019-2020 NORD RESEARCH STUDY
« Reply #110 on: October 26, 2019, 05:38:58 PM »
More re Nas’ Question

From:   Dr Tierney Lorenz
cc:        Dr Nicole Prause

Thank you Demo!

In answer to Nas’ question:  of course the community will be able to see the results of the research when it is completed. In fact, one of the things that we are dedicated to doing is releasing the (completely anonymized) data to a well-documented public database so that other scientists can benefit from this research and potentially come up with new ideas. However, because we are using the forum to recruit participants, it will be important that we not release results to the forum prematurely. We really want to make sure that folks are blinded to our hypotheses and to the directions we see the data taking, because it is a well-known phenomenon in research that as soon as the participant knows the way the experimenters are thinking about the data, they will behave in ways that are in line with those expectations. Unconsciously even, we all want to act in the way that is expected of us. But that would get in the way of having an objective study. We will do our best to keep you all updated on the sorts of things that would not violate that principle, such as how many people have started the study. But as for the results of the actual testing, I’m afraid that we will have to wait until all of the recruitment is completed. I should also take a moment to remind folks that this is a basic science etiology study – that means that we are looking at some possible predictors of the condition, but this is not a treatment study. We are not evaluating an intervention, although of course we hope that our data will help to make clear what kinds of interventions would be helpful (and give future research a leg up in validating possible interventions). We appreciate your understanding and patience- science is a very slow process- but it will move us forward!

Cheers
TKL
« Last Edit: October 26, 2019, 05:42:43 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

Muon

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #111 on: October 26, 2019, 05:54:45 PM »
Since this study has been greenlit, could we start collecting money for a potential follow up study? We could minimize the loss of time by skipping the fundraising inbetween studies.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #112 on: October 26, 2019, 06:06:11 PM »
Hi, Muon,

At this time (but it could change), NORD will not support our efforts beyond this UNL study.

Also, my hope is that Drs. Tierney & Prause - as they clearly expressed - will help us find a deeper-pocket-than-ours for funding a *larger* follow-up study, e.g., NIH, which has $39 billion a year dedicated to medical research studies!

That can only happen after publication of this current research.
« Last Edit: October 26, 2019, 06:54:33 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 2019-2020 NORD RESEARCH STUDY
« Reply #113 on: October 26, 2019, 06:37:19 PM »

Congrats on this Demo. And thank you for making this happen!


Animus’ response to my forwarding him the study-greenlighting news from this thread.
« Last Edit: October 26, 2019, 06:40:52 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 2019-2020 NORD RESEARCH STUDY
« Reply #114 on: October 26, 2019, 06:40:12 PM »
Since this study has been greenlit, could we start collecting money for a potential follow up study? We could minimize the loss of time by skipping the fundraising inbetween studies.
Muon, my apology for the inaccuracy of my earlier reply. It is now corrected (above).
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 2019-2020 NORD RESEARCH STUDY
« Reply #115 on: October 26, 2019, 07:01:35 PM »
Hi, Muon,

At this time (but it could change), NORD will not support our efforts beyond this UNL study.
What is the reason behind this? We can't just repeat the same process with NORD? So this is basically a one-time deal?

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #116 on: October 26, 2019, 07:22:43 PM »
Long boring story. PM me if you want more info.
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

Nas

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #117 on: October 27, 2019, 06:19:29 AM »
Ok thanks demo.

demografx

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Re: POIS 2019-2020 NORD RESEARCH STUDY
« Reply #118 on: October 27, 2019, 09:27:52 AM »
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 2019-2020 NORD RESEARCH STUDY
« Reply #119 on: October 27, 2019, 02:58:53 PM »
As you can see, there are 2 perspectives/answers to Nas’ question: NORD’s & UNL’s
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