Jacob's Clinic Study?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Jacob's Clinic Study?

Postby jay123 » Tue Sep 22, 2009 5:26 pm

Has anyone been accepted in to the study at the Jacobs clinic? I called but haven't got an answer yet.
Does anybody know if there is any inclusion/exclusion criteria they are using?
I want this tested, then I will check out the costs to get to Italy or Stanford!
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Postby bestadmom » Tue Sep 22, 2009 7:19 pm

The Jacobs study is now on their website and lists inclusions/exclusions. A few of us have been tested already and others are on the list, but it takes perserverence to reach them or to get a return call.
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Postby Jamie » Tue Sep 22, 2009 10:45 pm

So they are just testing not treating right?
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Postby bestadmom » Wed Sep 23, 2009 5:18 am

Correct, no treating.
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web site?

Postby jay123 » Wed Sep 23, 2009 7:03 am

I don't see any info the 'thejni' .org - is there another one?
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Postby bestadmom » Wed Sep 23, 2009 7:49 am

Try bnac.net for the info. It's a little hidden.
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Postby Sport » Wed Sep 23, 2009 9:01 am

Assuming the CCSVI paradigm for MS is true, doesn't their exclusion criteria pretty much exclude anyone with true MS: no vascular problems, no cognitive dysfunction, no vascular malformation, no cerebral vascular malformations?

Seems like they are excluding all the folks that they should actually be looking at.

I must be missing something.
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Postby cheerleader » Wed Sep 23, 2009 9:18 am

Sport wrote:Assuming the CCSVI paradigm for MS is true, doesn't their exclusion criteria pretty much exclude anyone with true MS: no vascular problems, no cognitive dysfunction, no vascular malformation, no cerebral vascular malformations?
Seems like they are excluding all the folks that they should actually be looking at.
I must be missing something.


Jacobs does not want patients with previously diagnosed vascular problems. Since jugular/azygos reflux has never been diagnosed before- until Dr. Zamboni began looking at it- they are establishing the uniqueness of CCSVI. Jacobs is being VERY careful with their research. Because this is a completely new paradigm, their exclusion criteria is even more stringent than typical MS exclusion criteria. They do not want any claims of research pollution...thus the quiet nature of the study, the lack of publicity, their desire not to have an online presence. For those of us who want to hasten the acceptance of this paradigm-we need to respect this.
capice?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sport » Wed Sep 23, 2009 9:55 am

Got it. The key term there is "previously diagnosed." They probably have many of those conditions, and not know about it. This way they can scan these folks, and say, "Aha!".
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Postby kaykayaa » Mon Sep 28, 2009 7:09 pm

I'm going to try to get in touch with Jacob's and although I've been to the website, the only information I see is an email....is there a phone number to call?
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Postby Sawdoggie » Mon Sep 28, 2009 7:42 pm

I emailed them and they got back with me within a day asking what is the best number to call me for a phone screening. I responded and haven't heard anything for a couple of days but the initial reply was quick.
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Postby CNClear » Mon Sep 28, 2009 9:07 pm

Gosh, I emailed over 2 weeks ago and haven't heard a thing...maybe I should try again...

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Postby Sawdoggie » Wed Sep 30, 2009 1:14 pm

I made an initial email contact with them last week and spoke with them yesterday for the health screening and I am all good to go next month. It is a three part event; 1) meeting with one of their physicians and doing a lengthy questionnaire; 2) the doppler study; and 3) about 2.5 hours of MRI time. They are still looking for people, MS and controls, and want to end up testing over 1,000 people. They mentioned they like to do family members if possible as well so my non-MS father was accepted and is going to go through the testing with me (we'll see how much he likes the tube). A 3T MRI is used for that portion which makes me wonder how much more they will see versus my 1.5T scans that I have had done. It should be interesting (or disturbing)! I would keep emailing if you don't hear anything and you want to participate. There is no cost to participating the study (seems obvious), but they do not reimburse for travel or lodging.
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