Has anyone here been involved in a Clinical Research Study?

[katinchatt]

Greetings,

Today I received a letter from a Research Study Group here in Chattanooga, asking me to please call them as they are interested in my recent diagnosis. I thought it was interesting for about a second. Obviously I was referred by my GI, since his former boss is the Medical Director of this research facility.

I know I'm getting better on Entocort, so why in the heck would I mess that up with the unknown? Basically I'm just curious how often "we" as rarities are contacted by these groups.

http://www.clinsearch-us.com/

Kat

[tex]

A few years ago, quite a few members who had tests done at Enterolab, were asked to participate in a study by Dr. Fine, but as I recall, it only involved completing some survey questions, over the phone. I've never participated in one, nor have I been invited to participate.

The project that you were contacted about, might possibly just be a survey, also, but there's no telling, without checking it out.

Tex

[katinchatt]

Morning Tex,

My DH thinks I should print out as much as I possibly can from this site and make an appoitment with the dear Doctor. Sit him down and make him "research" what the facts are about MC. Your recent post "Why Most GI Docs Are Totally Confused About MC" would be a great place to start....& he has a point. I've always been under the impression that these research facilities are funded by drug companies. Maybe I'll look into it a tad further and see what they are really about. There is a little part of me that is sure this would be a total waste of time, but then there is a bigger part of me that thinks as long as "we think" this way about our GI's, we aren't doing anyone any favors either.

I was a bit confused why/how they got my information considering this more or less flies in the face of all our current HIPPA laws, but since the Director is still on the board of my current GI's practice I suppose they are not considered a 3rd party.

[tex]

There is a little part of me that is sure this would be a total waste of time, but then there is a bigger part of me that thinks as long as "we think" this way about our GI's, we aren't doing anyone any favors either.

I definitely agree with you that our "standard" attitude toward our GI docs is counterproductive, and it would certainly be beneficial to "help" them to "update" their knowledge base about MC. That may be a tough sell for many GI docs, but as we have already seen, some are open-minded enough to be willing to learn from patients, when given an opportunity. One of the problems with using posts to this board as the source of information in that worthy endeavor, is that we have such an anti-GI doc bias, that if I were in their shoes, I would have a tough time warming up to any ideas presented here. No one likes to be criticized, even when criticism is due, especially those wearing white coats, and working out of offices with walls adorned with framed documents claiming expertise in medical specialities, and particularly when those esteemed documents relate to certified expertise in exploring the nether regions of the human body. See, I did it again. They're such easy targets, sort of similar to the way that late-night talk show hosts view politicians. LOL.

If you're serious about doing that, maybe I should go back and edit some of the closing lines in my posts in that thread, so that your doc doesn't call "Security" to have you thrown out the door, while he or she chunks the printout of that thread into the round file. LOL.

I believe you're quite correct in saying that virtually all but an infinitesimally small number of medical research projects are funded by the pharmaceutical companies. That's why you're not likely to see many projects investigating ways to treat MC by diet alone. I still wonder how the treatment for celiac disease slipped through the system, without any treatment requirements whatsoever, involving the use of meds. I'll bet they're not likely to let that happen again. LOL. In fact, though, Dr. Fasano's new "zonulin suppressing" pill, will soon correct that unsightly blemish on the pharmaceutical companies' records, so that doctors will finally be able to write a prescription to "cure" celiac disease.

I haven't looked into the privacy issues regarding the transfer of information within the medical system, but I do know that it is more liberal than the transfer of information to an outside source. As with most privacy "guarantees", there may be loopholes that an elephant could walk through, within the medical system itself. There are always exceptions, to every law, and they are mostly due to the government's "need" for information, and to organizations "reserving" certain rights, that they choose to restrict for others. A lot of people and organizations are always looking for ways to restrict others' rights, without restricting their own. The best example of this is our Congress, where they love to pass laws right and left, to restrict others' rights, but they always exempt themselves. I certainly don't consider that to be "right", but I don't write the laws - they do. LOL.

Tex

[katinchatt]

Tex,

If I were to follow up with this facility, I will let you know before I start printing anything out . . . LOL
You have a point, who in their right mind would take me serious showing up with such brutal honesty.

[tex]

Okay, being inherently lazy by nature, I won't edit anything, unless/until you advise me that it's time to do so.

Tex

[Gloria]

Tex,
I hardly think that you are "inherently lazy." In fact, I don't know how you manage to maintain this board, give advice, work and serve on the boards of organizations. We're the lucky beneficiaries of your hard work.

Gloria

[Dee]

I 2nd Gloria's post!!!
So very true!!!

Love
Dee~~~