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Author Topic: NORD Interim Report for POIS Study  (Read 285959 times)

COLM_2

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Re: NORD Interim Report for POIS Study
« Reply #140 on: March 30, 2016, 10:17:25 AM »
Quote from: LAPOISSE on March 30, 2016, 09:58:53 AM
Hello All,

Weren't we supposed to receive something on monday ?

Thanks

Lapoisse,

below posted recently by Demo (from NORD's contact) last week. Possibly meant this week? Also, "intends/expects" in the research world
probably means it won't be released until it is correct.

Frustrating wait it is, right enough when we are all waiting for some positive news.

Regards,
Colm

From NORD today, Wednesday, March 23, 2016

"Hi Demo,

Professor Komisaruk (your PI - principal investigator) intends/expects to submit the next scientific report to NORD by Friday the 25th or by the end of the week.

I will be sure to review right away and forward the public section (which will then be posted by you at the forum), which I've asked him to pay particular attention to.

All the best,
Jacqui" [Kraska]
NORD
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Raj

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Re: NORD Interim Report for POIS Study
« Reply #141 on: March 30, 2016, 12:19:14 PM »
We're waiting curiously!
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demografx

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Re: NORD Interim Report for POIS Study
« Reply #142 on: March 30, 2016, 12:25:18 PM »


On Wed, Mar 30, 2016 at 9:06 AM, demografx wrote:

Jacqui, is there a delay/problem?



On Mar 30, 2016, at 9:32 AM, Jacqueline Kraska wrote:

Hi Demo,

Due to the number of scientific reports that the MAC
[NORD's Medical Advisory Committee] needs to review there is a slight delay in posting the public section of the [POIS] report. However, the [POIS] report that the PI [Dr. Komisaruk] sent was great, he included a lot of detail to share, [bold-highlighting mine -- demo] and NORD looks forward to sending it over ASAP.

Best wishes,
Jacqui
NORD


« Last Edit: March 31, 2016, 11:50:43 PM by demografx »
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demografx

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Re: NORD Interim Report for POIS Study
« Reply #143 on: March 30, 2016, 01:58:53 PM »
Latest ETA from NORD: Friday Jacqui to hopefully receive Dr. K report - reviewed/approved by senior medical advisors @ NORD.

To all POISers: believe me, I'm as anxious to see this as you are :)

...and just as frustrated!!




« Last Edit: March 30, 2016, 11:27:17 PM by demografx »
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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

COLM_2

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Re: NORD Interim Report for POIS Study
« Reply #144 on: March 31, 2016, 12:40:23 AM »
Quote from: demografx on March 30, 2016, 12:25:18 PM



On Wed, Mar 30, 2016 at 9:06 AM, demografx wrote:

Jacqui, is there a delay/problem?



On Mar 30, 2016, at 9:32 AM, Jacqueline Kraska wrote:

Hi Demo,

However, the [POIS] report that the PI [Dr. Komisaruk] sent was great, he included a lot of detail to share, [bold-highlighting mine -- demo] .

Best wishes,
Jacqui
NORD

Thanks for update Demo,

sounds good !
« Last Edit: March 31, 2016, 11:48:23 PM by demografx »
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vetrofragile79

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Re: NORD Interim Report for POIS Study
« Reply #145 on: March 31, 2016, 08:08:57 AM »
cannot wait... come on! eheh :)
thanks demo

the full report will be visible on pubmed or similar?
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Stef

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Re: NORD Interim Report for POIS Study
« Reply #146 on: March 31, 2016, 03:00:18 PM »
Hi, ve-to and Everyone,

The information we're waiting for is the "public portion" of Dr. Komisaruk's recent NORD  progress report. Only this small portion will be shared with the forum for now, because he hasn't formally published his study in a journal yet.

NORD's MAC receives extremely detailed progress reports ~ every 6 months while a study is in progress. These interim reports are reviewed by the MAC for scientific merit.

As a courtesy to the groups funding these studies (like poiscenter!), NORD requests that the PI write an additional brief summary with each progress report...something that can be publicly shared/posted on the groups' websites before the study is actually published in a journal. Some PIs write several paragraphs for the public, but most often it's only a paragraph or two.

So, that's what we're waiting for -- the brief public summary.

Stef



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demografx

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Re: NORD Interim Report for POIS Study
« Reply #147 on: March 31, 2016, 03:14:02 PM »
From NORD today @ 1:13pm PST

Hi Demo,

Sorry, been crazy day... in meeting now and another right after. Yes, there are 4 reports due in total and 3 have now been submitted. So there will be a final [POIS report] due on 09.18.2016. [bold-type mine-demo]

And waiting to hear back from MAC but should be soon.[emphasis mine-demo]

All the best,
Jacqui
NORD


« Last Edit: March 31, 2016, 05:16:27 PM by demografx »
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TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

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demografx

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Re: NORD Interim Report for POIS Study
« Reply #148 on: March 31, 2016, 05:18:36 PM »
From NORD today @ 1:13pm PST

Hi Demo,

...And waiting to hear back from MAC but should be soon.[emphasis mine-demo]

All the best,
Jacqui
NORD








:) :) :)
« Last Edit: March 31, 2016, 05:22:24 PM by demografx »
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TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

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demografx

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Re: NORD Interim Report for POIS Study
« Reply #149 on: March 31, 2016, 07:15:35 PM »
While we're waiting...let's look @ NORD's......MAC: who are they???...
http://rarediseases.org/about/leadership/scientific-medical-advisory-committee/

We are so...fortunate!

What a stellar medical/research team to oversee POIS' medical research @ Rutgers!!


« Last Edit: March 31, 2016, 11:39:50 PM by demografx »
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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

Prancer

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Re: NORD Interim Report for POIS Study
« Reply #150 on: March 31, 2016, 07:25:00 PM »
Excellent, thanks everyone!!
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demografx

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Re: NORD Interim Report for POIS Study
« Reply #151 on: March 31, 2016, 07:34:25 PM »
:)
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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

joelawerence

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Re: NORD Interim Report for POIS Study
« Reply #152 on: April 01, 2016, 07:22:16 AM »
Eagerly awaiting :)
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demografx

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Re: NORD Interim Report for POIS Study
« Reply #153 on: April 01, 2016, 02:58:33 PM »
Quote from: joelawerence on April 01, 2016, 07:22:16 AM
Eagerly awaiting :)
Maybe with enough of us doing the same, our positive energy will expedite this :)


« Last Edit: April 01, 2016, 07:54:45 PM by demografx »
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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: NORD Interim Report for POIS Study
« Reply #154 on: April 01, 2016, 07:57:24 PM »
Wishing everyone a nice weekend :)
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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

rakeshbaasu

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Re: NORD Interim Report for POIS Study
« Reply #155 on: April 02, 2016, 05:18:16 AM »
Now that our sinking ship has seen a lighthouse... we all are excited...Thanks Demo... you are "The Captain"  :)
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Raj

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Re: NORD Interim Report for POIS Study
« Reply #156 on: April 02, 2016, 05:51:54 AM »
Demo, your new profile photo though! :P Mario saved princess, you will save us! :)
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Hoping

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Re: NORD Interim Report for POIS Study
« Reply #157 on: April 02, 2016, 09:08:34 AM »
Quote from: demografx on March 31, 2016, 05:18:36 PM
From NORD today @ 1:13pm PST

Hi Demo,

...And waiting to hear back from MAC but should be soon.[emphasis mine-demo]

All the best,
Jacqui
NORD


Thanks for the updates demo!!!
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demografx

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Re: NORD Interim Report for POIS Study
« Reply #158 on: April 02, 2016, 09:49:07 AM »








Thanks, everyone, for your terrific

 support!!!! :) :) :)






« Last Edit: April 02, 2016, 04:58:38 PM by demografx »
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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: NORD Interim Report for POIS Study
« Reply #159 on: April 02, 2016, 02:40:33 PM »


Quote from: Raj on April 02, 2016, 05:51:54 AM
Demo, your new profile photo though! :P
Your profile photo is cool, Raj! :)



Quote from: Raj on April 02, 2016, 05:51:54 AM
...Mario saved princess, you will save us! :)
HAHA, Raj! :)



« Last Edit: April 02, 2016, 05:18:13 PM by demografx »
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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
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