Update on the Meeting held at NIH

[lss]

Just a brief note on the meeting held this past Sunday and Monday at the NIH- A "White Paper" (factual right up) will be coming out in the next few months. Over 200 Pandas stories were reviewed at the conference. I have no knowledge what the paper will say.

 

Linda

[peglem]

Is that why Dr. Latimer was asking for us to fill out spreadsheets? Thanks for keeping us up to date!

[Tenacity]

Do you know how/where this "White Paper" will be published?

[kimballot]

Excellent! This is the first step toward guidelines. This is huge. I can only hope that it is better than the NIH website. Thanks for letting us know.

[fuelforall]

Yes, Kimballot, I believe you are right.

 

I cannot be sure but I believe this pertains to the announcement Dr K was hoping for at the OCF Conference.

The White Paper will hopefully acknowledge PANDAS officially as a valid diagnosis for pediatricians etc to look for. No more "does it exist" junk.

 

But again I can't make promises.

Edited July 23, 2010 by fuelforall

[JAG10]

What is a "White paper"? Where is it published?

 

Sounds like the White Album, White Rabbit, White-washed........

[JAG10]

A white paper is an authoritative report or guide that often addresses issues and how to solve them. White papers are used to educate readers and help people make decisions. They are often used in politics, business, and technical fields. In commercial use, the term "white paper" (or "whitepaper") has also come to refer to documents used by businesses as a marketing or sales tool.

 

Will it be put out via NIMH???

 

That would be pivotal, yes? Or does it have to be a study in a refereed journal to get the medical community nod?

[smartyjones]

Yes, Kimballot, I believe you are right.

 

I cannot be sure but I believe this pertains to the announcement Dr K was hoping for at the OCF Conference.

The White Paper will hopefully acknowledge PANDAS officially as a valid diagnosis for pediatricians etc to look for. No more "does it exist" junk.

 

But again I can't make promises.

 

 

fuel for all -- what;s your inside track on this meeting? you seem to have a lof of info. . .

[fuelforall]

fuel for all -- what;s your inside track on this meeting? you seem to have a lof of info. . .

 

 

Wish I knew. I only know what Dr K said to me and he said he was going to come out of that meeting with PANDAS recognized once and for all.

 

Hope it's true.

[Iowadawn]

When we were in Chicago late April for IVIG I asked Dr. K what would come of this meeting. He said that a paper would be published in a major journal, e.g., Neurology or some other journal. Dawn

[kimballot]

A white paper is an authoritative report or guide that often addresses issues and how to solve them. White papers are used to educate readers and help people make decisions. They are often used in politics, business, and technical fields. In commercial use, the term "white paper" (or "whitepaper") has also come to refer to documents used by businesses as a marketing or sales tool.

 

Will it be put out via NIMH???

 

That would be pivotal, yes? Or does it have to be a study in a refereed journal to get the medical community nod?

Yes - I believe white papers are the first step toward guidelines and regulations. White papers are "softer" than guidelines and the expectation is that they will be revisited in a relatively short period of time for updating... with potential transformation to accepted guidelines. I suspect there is way too much controversy and way to little hard high-level research to do guidelines at this point. But a white paper at least means there is merit to further investigation, and there is merit to treatment.

[Mary M]

When we were in Chicago late April for IVIG I asked Dr. K what would come of this meeting. He said that a paper would be published in a major journal, e.g., Neurology or some other journal. Dawn

 

 

When we were in Chicago in June Dr K said the same...the world would recognize PANDAS on July 18 and he was submitting his paper for publication in the Lancet.

 

The white paper seems like a giant stopping point for Dr K's predictions.

 

I have a request in with a Hospital medical librarian for either/or the white paper, pubmed, Lancet article---anything pertaining to this but this Forum usually gets stuff out to one another faster than the real world! Let's hope it's soon!

Mary

from Michigan

[Iowadawn]

Along with the publication comment, Dr. K stated that child psychiatry is about ready to be turned on its head. I hope that Big Pharma isn't paying attention!! I was hoping for some sort of comment shortly after the conference. I have a feeling we will be waiting a bit. Dawn

[peglem]

Along with the publication comment, Dr. K stated that child psychiatry is about ready to be turned on its head. I hope that Big Pharma isn't paying attention!! I was hoping for some sort of comment shortly after the conference. I have a feeling we will be waiting a bit. Dawn

But, for Dr. K to have been giving these hints...does that mean there has been behind the scenes collaboration? I wonder if these doctors enjoy getting together w/ other physicians who understand as much as we enjoy being w/ other parents who understand? I'm glad to see the cause moving forward, even though it tries my patience to have it moving so slowly.

[JAG10]

Along with the publication comment, Dr. K stated that child psychiatry is about ready to be turned on its head. I hope that Big Pharma isn't paying attention!! I was hoping for some sort of comment shortly after the conference. I have a feeling we will be waiting a bit. Dawn

 

Big Pharma.......Insurance companies.......the whole IVIG shortage angle....child psychiatrists....

 

No shortage of stakeholders with incentive to push back.