phone number to Jacobs neurology clinic for CCSVI study

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phone number to Jacobs neurology clinic for CCSVI study

Postby javaneen » Mon Jun 22, 2009 7:18 am

I can't find the number to the Jacobs neurology clinic. I know it was posted but I can't seem to find it.

Also does anyone have anymore details? Such as how long the study is. What the exclusion/inclusion criteria are? Is their an application process? And any other info you would like to share. Thanks!
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Postby peekaboo » Mon Jun 22, 2009 7:49 am

I tried to find the jacobs clinical trial on the clinicaltrial.gov site and could not find a reference. there is a NYNY trial. maybe they are related. that is posted under MRV clinical trials NYNY, MD, France.
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Postby cheerleader » Mon Jun 22, 2009 8:44 am

Jacobs Neurological Institute
CCSVI study- (Thanks to Sharon for this number)
contact: Cheryl number deleted- read next post
http://www.thejni.com

The clinical trials Holly found are great- MRIs of greater detail and strength of the brain...but Jacobs is following the Zamboni protocol and looking at the jugular veins and azygos veins specifically with doppler and the mrv techonolgy (if indictated.) Sharon has also posted that this is not the treatment protocol Dr. Dake is performing, but is merely a diagnosing test. Patients will get their info on a disc if they request.
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Last edited by cheerleader on Mon Jun 22, 2009 11:00 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby javaneen » Mon Jun 22, 2009 10:03 am

Ok...here's the scoop. I spoke with Cheryl at Jacobs neurology institute and due to the institution review board (IRB) her name and number cannot be posted in cyber space as part of the recruiting process. The recruiting process apparently must be controlled according to the IRB so they cannot have their info out there for anyone to read. They are working on getting info on the JNI website with info about the CCSVI study. I am not sure if we can delete her name and number from the posting or not.

Also, she was kind enough to explain the process to me and one thing I think needs to be stressed to everyone. This is simply a clinical diagnostic study. Not an intervention study as I believe was already mentioned here somewhere. However, when I asked if we would either get the results or get copies of the testing she said no. We will not get the results unless they see something incidental that we need to know about. Stenosis of the IJV is not something considered incidental as that is what they are looking for. We will only receive a copy of the MRI, not the MRV and Doppler.

Good luck to everyone trying to get in the study. Cheryl was very nice and accommodating and hopefully the info will be up soon on the JNI website.
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Postby IHateMS » Mon Jun 22, 2009 12:22 pm

Except for helping science, there really is no purpose (for me) to get in the study. No need to drive six-eight hours.

Is that being selfish? :oops:
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Postby MaggieMae » Mon Jun 22, 2009 12:22 pm

I was thinking the same thing.
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Postby peekaboo » Mon Jun 22, 2009 12:24 pm

No you are not being selfish...it would cost enough for it to bo cost prohibitive. having ms can be costly enough.
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Postby coach » Mon Jun 22, 2009 1:45 pm

I guess I am more intereted in the whole enchilada (testing plus intervention) since I am probably at about a 6 EDSS and sliding toward a 6.5 or 7 so I am more interested in the work Dr. Dake is doing and have been working on an e-mail I plan to send him. But plan to keep this info on file if things fall through with Stanford.
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Postby peekaboo » Mon Jun 22, 2009 2:09 pm

Coach -

I sure hope that things work out for you to go to stanford. Dr. D is very accessible. I am near the top of the edss scale too. I haven't been tested for that in a loooong time.
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Postby Sharon » Mon Jun 22, 2009 2:15 pm

I am not sure if we can delete her name and number from the posting or not.


I have edited the post with Cheryl's phone number. I would suggest people call the main number which is listed at the Jacob's website - and ask for Cheryl or PM me.

javaneen - thank you for clarifying
Stenosis of the IJV is not something considered incidental as that is what they are looking for. We will only receive a copy of the MRI, not the MRV and Doppler.


I had understood that Jacob's will not give you the results of the tests, but that you could request a CD - I did not realize it was for the MRI only.

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Postby Sharon » Mon Jun 22, 2009 2:19 pm

Coach -

I might suggest that you call Dr. Dake's office - he is very responsive and would call you back if not available at the time. Have your list of questions in front of you - he will answer all of them.

Good luck
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Postby guitarguy » Mon Jun 22, 2009 2:54 pm

Does anyone have the number for Dr. Dake?
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Postby peekaboo » Mon Jun 22, 2009 4:17 pm

MICHAEL D. DAKE, M.D.

Professor, Department of Cardiothoracic Surgery

Stanford University School of Medicine

Falk Cardiovascular Research Center

300 Pasteur Drive

Stanford, CA 94305-5407

t: 650.725.6407
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Postby guitarguy » Tue Jun 23, 2009 5:45 am

Thank you, I went to the stanford website and found it myself. lol I guess I should have looked on my own first before asking. Thanks again :)
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