Hubbard Foundation CCSVI Multi-Center Registry is approved

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

Hubbard Foundation CCSVI Multi-Center Registry is approved

Postby cheerleader » Thu Sep 02, 2010 11:00 am

If you have an interventional radiologist interested in testing and treating CCSVI, they can join the Hubbard Foundation IRB, and not have to apply as an individual for IRB approval---

Here is the information---
link

contact the Hubbard Foundation for further information-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Sep 02, 2010 11:07 am

Registry data!!! Fantastic news!
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Postby Rokkit » Thu Sep 02, 2010 11:13 am

Am I missing something, or is this thing sheer genius?
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Postby MrSuccess » Thu Sep 02, 2010 11:29 am

well done JB :!:
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Postby cheerleader » Thu Sep 02, 2010 12:41 pm

Rokkit wrote:Am I missing something, or is this thing sheer genius?


Dr. David Hubbard is a very bright and caring neurologist. It just so happens his son was diagnosed with MS in December and his wife hit the internet to learn about new research in MS and found CCSVI in MS on Facebook. Dr. Hubbard was really dubious at first, so he went straight to Dr. Mark Haacke. He's been researching the connection of MS to blood flow ever since. His son had severe jugular stenosis and had angioplasty. He is doing quite well. Dr. Hubbard's IRB is brilliant---and will allow IRs around the country to sign up and have IRB approval. You're right, rokkit...it is genius.
cheer

This study is a multi-center registry of CCSVI Testing and Treatment at interventional radiologist facilities all around the country. In this new Registry study, qualified IR may participate if they abide by the protocol that requires objective testing by an outside MRI facility and clinical and MRI evaluations for restenosis or disease progression at 6 and 12 months after treatment. Any treating physician may refer his/her patient with suspected CCSVI, including but not limited to MS. After informed consent is obtained by the participating IR center, the patient is referred to a nearby MRI facility for the Haacke Protocol which will be reviewed by Haacke’s institute although the details will have to worked out at each site. If this proceeds, smoothly Dr. Haacke will not need to obtain his own separate IRB which to date has proved difficult at Wayne State because of the opposition of the neurologists there. If positive, the IR will perform catheter angiography and if appropriate venoplasty . The patients will be evaluated before and at 6 and 12 months by MRI and disability ratings.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HappyPoet » Thu Sep 02, 2010 1:11 pm

I'm happy for Dr. Haacke.

He could become a very busy guy!
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Postby drbart » Thu Sep 02, 2010 8:57 pm

HappyPoet wrote:I'm happy for Dr. Haacke.

He could become a very busy guy!


He's already a very busy guy.
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Postby Cece » Fri Sep 03, 2010 6:02 am

Dr. Hubbard, being a neurologist, can help bridge some of the gap between the two disciplines (interventional radiology and neurology). I really like his BOLD brain oxygenation research, how can you argue with that? And I assume any research or papers he ends up writing will be published in neurology journals, not the vascular journals, so more exposure to CCSVI for the neurologists reading them.
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Postby HappyPoet » Fri Sep 03, 2010 7:56 am

drbart wrote:
HappyPoet wrote:I'm happy for Dr. Haacke.

He could become a very busy guy!


He's already a very busy guy.

Yes, I know he is. Very glad you caught that my words didn't convey my intended meaning.
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Postby Cece » Sun Sep 12, 2010 5:41 pm

This was just posted on the CCSVI Facebook site. It's the list of sites that have applied to be part of Dr. Hubbard's IRB.

http://tinyurl.com/2wv995m
CCSVI Registry Sites
Interventional radiology sites pending. Hubbard Foundation, sponsor of Multi-center Registry for CCSVI Testing and Treatment. Number of sites enrolling patients: none. As soon as the sites are ready, their contact information will be posted

Minneapolis is on the map!
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Postby PCakes » Sun Sep 12, 2010 5:49 pm

wow! Cece ..thanks!! Look at them all!! and Vancouver, B.C.????!!! How can that be??? don't care..yay!!!

** I do understand 'application'.. it's just exciting to see us on the map :)
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Postby CRHInv » Sun Sep 12, 2010 5:49 pm

Thanks Cheer! I have sent this information to a couple of doctors here, hoping someone will be interested or share it with someone else who would find it helpful.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby garyak » Sun Sep 12, 2010 5:58 pm

hopefully 2-3000 patients get treated in the US in the next 12 months
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treatment sites

Postby Rosegirl » Mon Sep 13, 2010 4:27 am

If these locations are participating, shouldn't we list the name of the doctor(s) and the facility?

For example, Baltimore MD is listed twice along with its suburb of Towson. It's possible that these are just two different offices of the University of Maryland and the same doctor supports both locations.

And if we've finally reached the point where we can list facilities and doctors, shouldn't we also list contact phone numbers for the convenience of those who need it? Why make folks have to play detective to track down a way to contact each facility?
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Postby Cece » Mon Sep 13, 2010 5:24 am

I don't know, this is all the information that Dr. Hubbard shared. They've applied but not been accepted; they may not be ready for patients just yet.
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