CCFA (Crohn's and Colitis)

[JLH]

I heard from a manager of the Information Resource Center after complaing that their VP of Research said MC was not an IBD. This is part of her email answer:

"CCFA has developed a fact sheet on microscopic colitis but at this time we do not sponsor specific microscopic colitis research. CCFA sponsors an annual clinical and & Research conference for doctors and scientific researchers. This year’s conference is called “2008 Advances in IBD” (Dec 4-7). At this conference we educate doctors and researchers about various topics. This year one of the topics is on Microscopic colitis (MC) and will be presented by Dr. Darrell S. Pardi, MD. Through this session we will educate more doctors about MC."

HMMMMM.............

PS She should know not to use Dr. and MD, shouldn't she?

[JLH]

http://mayoresearch.mayo.edu/mayo/resea ... rdi_ds.cfm

[angy]

I wonder if he is any good...knowledge wise that is...

[tex]

The "officials" connected with that site seem to have a habit of making obvious errors, don't they. Since she didn't seem to come right out and admit that they were mistaken, and that MC actually is an IBD, I suppose we have to assume that they are including a presentation on MC in this year's annual conference, just to educate doctors on non-IBDs. LOL.

Tex

[tex]

Angy,

His "credentials" look pretty good, based on his publications. (You can view a list of them, from the page that Joan cited).

The publications include this one, which sort of shows just how good pathologists actually are at diagnosing MC:

http://www.ncbi.nlm.nih.gov/pubmed/1862 ... d_RVDocSum

IOW, this research project shows that a typical pathologist is "exactly" correct approximately 70 % of the time, and can tell the difference between MC and non-MC diseases, (such as IBS), about 90 % of the time. Not exactly perfect, but better than I expected, I suppose. A lot of people mistakenly assume that when a pathologist hands down a diagnosis, it is correct, 100 % of the time. This is not so, obviously.

Doctors at the Mayo Clinic usually rank well above average, especially in the field of gastroenterology.

Tex

[JLH]

The VP of Research and Scientific Programs was the one who said it wasn't an IBD, not the woman who sent me the conference info.

CCFA needs to get their act together, I must say.

[JLH]

I’m sorry for the delay in response. I have learned from CCFA’s Vice President of Research and Scientific Programs that CCFA does not sponsor research specific to microscopic colitis since it is not considered Inflammatory Bowel Disease. CCFA’s research is focused on IBD – Crohn’s disease and ulcerative colitis. As you may know, we do provide information about microscopic colitis on the website for those patients who have been diagnosed with the disease and are unclear about the difference between microscopic and ulcerative colitis: http://www.ccfa.org/about/news/microscopiccolitis . As I mentioned during our conversation, much of the research that focuses on IBD, ulcerative colitis, can translate to helping patients with microscopic colitis. In particular, the research for newer and better treatments to decrease inflammation in the colon can be beneficial to patients with both diseases.

[tex]

The VP of Research and Scientific Programs was the one who said it wasn't an IBD, not the woman who sent me the conference info.

I realize that, but the fact that she didn't even mention the gaffe by the VP, (let alone, attempt to correct the error), implies that she either agrees with that erroneous position, condones such errors of judgment, or is afraid to offer a contrary opinion, (which may be prudent, for anyone holding a subordinate position in an organization such as that).

Tex

[harvest_table]

"CCFA has developed a fact sheet on microscopic colitis but at this time we do not sponsor specific microscopic colitis research. CCFA sponsors an annual clinical and & Research conference for doctors and scientific researchers. This year’s conference is called “2008 Advances in IBD” (Dec 4-7). At this conference we educate doctors and researchers about various topics. This year one of the topics is on Microscopic colitis (MC) and will be presented by Dr. Darrell S. Pardi, MD. Through this session we will educate more doctors about MC."

HMMMMM.............

PS She should know not to use Dr. and MD, shouldn't she?

With all due respect, since my dx with CC I have been researching MC and related problems for a few years and Dr. Pardi is an excellent choice of speakers for this conference. MC can and will lead to all sorts of complications, including chrons and good for the Chrons foundations conference for booking him in to speak.

Google Pardi, and microscopic colitis on the web and you will get over 2300 articles and publications.

Joanna

[JLH]

I think you are totally misunderstanding me. I thinks it's great that CCFA is having Dr. Pardi speak about MC at their conference. (Why do you think otherwise?)

What I am upset about is the VP of Research saying MC is not an IBD.

Tex, I think you are right about the info specialist, Amy. I do think she might have given that VP the info I sent from the med school at Northwestern that said MC was an IBD, though.

I wish the manager would call me back but maybe she's on vacation........

[JLH]

Nevermind....................

[JLH]

She said it was a mistake that I got information that MC is not an IBD!

[tex]

Well that sounds a lot better.

Tex

[harvest_table]

I think you are totally misunderstanding me. I thinks it's great that CCFA is having Dr. Pardi speak about MC at their conference. (Why do you think otherwise?)

What I am upset about is the VP of Research saying MC is not an IBD.

Sorry, I did misunderstand you.

Thank you for your dedication and contribution to this board. I learn alot from your posts because they are thought provoking.

Joanna

[JLH]

Thank you.

I'm thinking that maybe the "hmmm" was confusing. I said it because they were having a conference on IBD and MC was being included. (The VP of Research had said MC was NOT an IBD.) It had no reference to Dr. Pardi. I'm very happy and amazed that he'll be educating other doctors about MC at a CCFA conference.

The CCFA has said all along that it is only supporting Crohn's and Ulcerative Colitis so this interest in MC is a great thing.

I donated to CCFA for the first time last year because of our dear friends' grandson who has Crohn's. Their son and daughter-in-law chaired or co-chaired the CCFA ball in Philly.