Prevalence of CCSVI in Multiple Sclerosis & Other Diseas

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

Prevalence of CCSVI in Multiple Sclerosis & Other Diseas

Postby zap » Sun Jul 03, 2011 10:01 am

Pardon me if this was already posted - I searched for it but did not see it anywhere:

http://clinicaltrials.gov/ct2/show/NCT01384825

The presence of abnormalities in the cerebral venous circulation, defined as Chronic Cerebrospinal Venous Insufficiency (CCSVI), has recently been reported in patients with Multiple Sclerosis (MS), in healthy subjects and in subjects with other neurological diseases. These reports have aroused much interest both in the scientific world and, above all, among the communities of patients and Associations having the aim of aiding people with MS and of promoting scientific research into this disease.

In the literature published so far there is a lack of verification in large samples of the prevalence of CCSVI in MS compared with that observed in healthy subjects and in those with other diseases of the nervous system.

This is an observational study investigating the prevalence of CCSVI in subjects with MS and comparing it with the prevalence observed in a control population consisting of Healthy Controls (HC) and in a population affected by other neurological diseases of the central nervous system of degenerative, vascular, inflammatory and autoimmune origin.

A total of at least 1,200 adults with MS will be included in the study, as well as 400 healthy subjects and 400 subjects with other neurodegenerative diseases.


Results should be interesting!
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What studies to trust and why.

Postby MegansMom » Tue Jul 05, 2011 9:55 am

The problem with these studies is that they usually use a technician dependent method to find the reflux/blockages.

Venography is the "gold standard" and even venography(fluoroscopy) has missed things that IVUS has found.

In some studies they used relatives (this should have been excluded)

In some studies the ultrasound technicians didn't have adequate training.

So when these places are designing studies they should look for methods that are "fool proof". Many lives are influenced on the results, so care should be taken to ensure accuracy.

When reading study results I would encourage people to read details. What methods did they use? Were there exclusions or inclusions and why? Were there conflicts of interest? Who assessed the patients and what did they use to measure. Who sponsored the research? Does the total match the results?

I would trust studies like Dr David Hubbards fMRI BOLD study- the results are totally objective and measurable.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Cece » Tue Jul 05, 2011 10:13 am

There are careers to made in CCSVI, particularly by those who get their papers out first, which will then be cited by others, and be seen as foundational work. Hastiness works against the sort of care in trial design that is desirable. There also seems to be an assumption that CCSVI is or should be easy to find regardless of the methods (and since methods aren't standardized yet, we get all sorts). Funding is another limiting factor.
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