Author Topic: NORD Interim Report for POIS Study (Read 285999 times)

demografx · « **Reply #200 on:** April 13, 2016, 12:13:34 PM »

While we're waiting...again

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 our POIS medical research @ Rutgers!!

demografx · « **Reply #201 on:** April 15, 2016, 10:23:40 AM »

On Thu, Apr 14, 2016 at 10:35 PM, demografx wrote:

...I thought I'd check in [to NORD] just in case there's any news - minor news is good

-
that I can let my POIS readers know about --anything new over the weekend...

Be well,
demo

On Apr 15, 2016, at 6:24 AM, Jacqueline Kraska wrote:

...[The POISCenter Interim Report] is currently being reviewed by the Chair of our Medical Advisory Committee [MAC] and [we] hope to share it by the close of Monday....

All the best,
Jacqui
NORD

demografx · « **Reply #202 on:** April 18, 2016, 03:30:22 PM »

On Mon, Apr 18, 2016 at 3:01 PM, demografx wrote:

Hi Jacqui...

Still possible today??
demo

On Apr 18, 2016, at 12:52 PM, Jacqueline Kraska/NORD wrote:

Hi demo,

Still possible... and I have been sent feedback in the evening, especially given the different timezones.

I know a priority was set on completing the review... but I will follow up again tomorrow, if I don't hear back by the end of the day.

Let you know ASAP.

All the best,
Jacqui
NORD

Limejuice · « **Reply #203 on:** April 18, 2016, 04:33:02 PM »

Thanks for the persistence Demo!

demografx · « **Reply #204 on:** April 18, 2016, 05:59:15 PM »

Limejuice, it's a tough job, somebody's gotta do it!

joelawerence · « **Reply #205 on:** April 19, 2016, 04:07:30 AM »

Good job, Demo. Thanks for your efforts

demografx · « **Reply #206 on:** April 19, 2016, 10:44:44 AM »

Thanks, JL!

demografx · « **Reply #207 on:** April 20, 2016, 01:15:57 PM »

On Wed, Apr 20, 2016 at 10:46 AM, demografx wrote:

Just checking in-
demo

On Apr 20, 2016, at 11:03 AM, Jacqueline Kraska/NORD wrote:

Hi demo,

Sorry, no feedback yet. I'm going to follow up again now.

Thank you for keeping on top of this and following up....

All the best,
Jacqui
NORD

Raj · « **Reply #208 on:** April 21, 2016, 08:37:21 AM »

demografx · « **Reply #209 on:** April 21, 2016, 02:08:33 PM »

Quote from: Raj on April 21, 2016, 08:37:21 AM

Don't fret, Raj:

LAPOISSE · « **Reply #210 on:** April 22, 2016, 12:34:30 PM »

Quote from: demografx on March 26, 2016, 12:44:06 PM

NICE EASTER PRESENT!! -- demo

On Mar 26, 2016, at 10:40 AM, Jacqui <jkraska@rarediseases.org> wrote:

Hi Demo, you too! [Happy Easter]

I received the [interim] report so I'll send over Monday morning after reviewing.

All the best,

Jacqui
NORD

Am I alone to think think this delay is crazy ?I know its science and we have a such an experimented team at Nord but in the world I live, such a delay without any explanation is not acceptable.

I'm not expecting much of this report but we all payed for that and have already been waited such a long time ; I think we deserve a bit of courtesy

LAPOISSE · « **Reply #211 on:** April 22, 2016, 12:42:26 PM »

We are not even in the NORD database???

demografx · « **Reply #212 on:** April 22, 2016, 07:03:14 PM »

Hi, LAPOISSE,

THANK YOU, I forwarded your comments to NORD.

demo

demografx · « **Reply #213 on:** April 22, 2016, 07:38:16 PM »

I can say with certainty that most medical research can be slow and frustrating at times.

demografx · « **Reply #214 on:** April 23, 2016, 03:09:38 PM »

Quote from: rakeshbaasu on March 21, 2016, 10:08:14 AM

I wish we get to know about some medicine with this research. Though official drug may take some time.

Let's hope that our future POIS pharmaceutical research goes better than this:

vik1379 · « **Reply #215 on:** April 23, 2016, 05:14:20 PM »

Dear Demografx!

1) Would you please to to summarise - to write some words about current situation with POIS-research by BArry Komisaruk.
Do we have any results? Any recommendation for us?
Are we waiting for any another information from Barry?

2) By your own opinion. By your own current feelings and experience - what is the POIS in your case? How are you defending yourself from POIS and how are you fighting against symptoms of POIS?
I appreciate you for your answer!

Regards,
Dmitry!

demografx · « **Reply #216 on:** April 23, 2016, 06:52:04 PM »

Quote from: vik1379 on April 23, 2016, 05:14:20 PM

Dear Demografx!

1) Would you please to to summarise - to write some words about current situation with POIS-research by BArry Komisaruk.
Do we have any results? Any recommendation for us?
Are we waiting for any another information from Barry?

2) By your own opinion. By your own current feelings and experience - what is the POIS in your case? How are you defending yourself from POIS and how are you fighting against symptoms of POIS?
I appreciate you for your answer!

Regards,
Dmitry!

Hi Dmitry,

1) here are the first 2 scientific progress reports so far that Dr Komisaruk submitted to NORD -- we are still waiting for #3:

http://poiscenter.com/forums/index.php?topic=2285.msg18645#msg18645

#4 (the Final Report) is due: September 18, 2016.

2) I personally found testosterone to be very effective for my POIS:

http://poiscenter.com/forums/index.php?topic=17.0

Best POIS-free wishes, Dmitry, and please see our Welcome Page!
http://tinyurl.com/lwwns6z

Best regards,
demo

demografx · « **Reply #217 on:** April 24, 2016, 08:10:11 PM »

Quote from: Lodewijkp on April 22, 2016, 01:55:56 PM

Here is the latest report on the situation in NORD and their ferocious work ethic

https://www.youtube.com/watch?v=NCHq0m67lq8

Lodewijkp, I don't understand your post...please explain?

Thank you!

demo

demografx · « **Reply #218 on:** April 25, 2016, 03:08:03 PM »

From email exchange today between demografx and Jacqui Kraska/NORD:

The PI (principal investigator), Dr Komisaruk, did send his scientific report and actually it is comprehensive. However, NORD's Medical Advisory (MAC) does need to review the report for assessing the work that has been done and progression in comparison to the previous report, and give approval before we publish the public section. Our MAC is made up of volunteers who review reports and fulfill all other MAC responsibilities in their spare time and Jacqui Kraska truly believes given their professional commitments they do the best they can. There were an extensive number of reports that went over last time (more than ever in the past) and it's taken time to do the reviews and looking at prior reports.....

Jacqui is sorry that she cannot share them earlier, but she cannot herself do this piece of work, all she can do is follow up and be supportive of MAC doing it.

demo

certainlypois2 · « **Reply #219 on:** April 25, 2016, 04:45:43 PM »

This report is not going to tell us much right? It is the final paper that will tell us what really want to know, the results.

News:

Author Topic: NORD Interim Report for POIS Study (Read 285999 times)