What's happening?

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

What's happening?

Postby tzootsi » Tue May 29, 2012 7:11 am

Pretty quiet here lately....... Anyone know if Buffalo is still doing trials? How about Kuwait? Dr. Haake?
Dr. Dake? I understand one of the trials in Albany was stopped, but how about Dr. Siskin?
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Re: What's happening?

Postby Cece » Tue May 29, 2012 10:03 am

The Dr. Mehta trial in Albany has stopped, and the Hubbard Foundation has decided to not pursue further research. Dr. Dake's trial has not yet begun due to waiting for a neurologist partner to come onboard, and now Dr. Goodin has shown an interest, so we'll have to see if something comes of that.

Here's the clinical gov site for some of the other studies underway: http://clinicaltrials.gov/ct2/results?term=ccsvi

I wasn't aware that Dr Hunter of University of Stirling had a study planned. "Functional Changes Following Percutaneous Venoplasty in Multiple Sclerosis Patients"
Accordingly the investigators propose to use a repeated measures design on an experimental (receiving venoplasty) and control (not receiving venoplasty) MS groups (6 patients in each group) to determine the effect of the treatment on muscular function, mobility and fatigue. This would be combined with independent blinded neurological assessment of the two groups of patients.
Really small sample but the independent blinded neurological assessment sounds good, as done having a treatment group and a control group.
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Re: What's happening?

Postby frodo » Sun Jun 17, 2012 12:46 pm

Cece wrote:and the Hubbard Foundation has decided to not pursue further research


Sad. I had hopes in this research. Is it at least still active their multicenter trial?
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Re: What's happening?

Postby cheerleader » Sun Jun 17, 2012 12:57 pm

Multi-center will continue. Hubbard Foundation has applied for FDA approval for their sites.
Since Siskin's FDA approval was granted, we're all hoping to learn of new FDA approvals in the coming weeks.
The Hubbards decided to sell their MR machine....it was costing them more than they were making to scan. But they are still involved in the research.
It's been a tough time, but the doctors and researchers are commited to learning all they can about CCSVI and neurodegenerative disease.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: What's happening?

Postby orion98665 » Sun Jun 17, 2012 3:34 pm

OK,

i just noticed that Seattle use to be on the map as an IRB regestered facility using the Hubbard foundation website.
Does anybody know why Seattle isn't listed anymore???

http://maps.google.com/maps/ms?hl=en&ie ... psrc=0&z=3
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Re: What's happening?

Postby Cece » Sun Jun 17, 2012 4:13 pm

That's Dr.McGuckin, isn't it? He pulled out after the FDA letter. No idea if it's temporary and he'll be back in if the IDE gets approved or if he's no longer interested in being in the registry.
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Re: What's happening?

Postby CureOrBust » Mon Jun 18, 2012 8:04 am

I may be mistaken, but I think a small trial is under-way in Victoria, Australia, at the Alfred.
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Re: What's happening?

Postby cheerleader » Mon Jun 18, 2012 6:38 pm

you are correct, Cure. And Zamboni's Brave Dreams randomized trial begins this month in Ferrara.
http://bravedreams.ccsvi-sm.org/en/clinical-trial
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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