This Is MS Multiple Sclerosis Community: Knowledge & Support

I want to start a topic which lists all the trials, where they are, and how you can contact them. Will those making entries please indicate what the criteria for enrollment if you know, and make a post when enrollment is complete and contacting them would no longer be of any use.


The two I know of are:

Stanford I know no other details
Contact:ADuran@stanfordmed.org
Not approved yet. (5/22/2010)

Dt. D. Sclafini
contact: ccsvi.response.to.hb@gmail.com
Details: Not approved by IRB yet (5/22/2010)

8-19-10Hubbard foundation in San Dego:
http://www.hubbardfoundation.org/
e-mail hubbardfoundation@gmail.com
I don't know details.

If you go to Bulgaria you are part of a study. The pepole behind it are both academics. dr grodsisky is a professor, and dr. petrov is assistant professor. They stressed how important it was to get us back after six months or at least a report of results after six months, both neurological and vascular results. You either had to have neurological examination there or have with you a proper report. The new place in Poland is said to be a formal study as well.

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

Hi Fogdweller, I believe Dr. Sandy McDonald is planning a trial once he gets funding and permission to proceed. That is through the Barrie Vascular Imaging Centre, Barrie, Ontario, Canada.

_________________
Onthelake

I am a great believer in luck, and I find the harder I work, the more I have of it.  Stephen L.

THE VASCULAR GROUP, PLLC
43 NEW SCOTLAND AVENUE, MC 157 ALBANY, NEW YORK 12208-3479
Tel. 518.262.5640 | Toll Free 1.877.VASCULAR (1.877.827.2852)

Manish Mehta, MD

http://clinicaltrials.gov/ct2/show/NCT01089686

http://www.albanyvascular.com/index.htm

This study is not yet open for participant recruitment.

Contact:
Megan Wilcox, LPN 518-218-7909 wilcoxm@albanyvascular.com

I know University of Texas - Houston Medical Center is conducting a study and accepting applicants right now, but I can't find any web info on it. They are looking for 300 people with various stages of MS.

Contact the Department of Neurology, Multiple Sclerosis Research Group. 713-500-7045

fogdweller -
great idea to list this all in one place.
elyse[/code]

You can also go to www.clinicaltrials.org. This is a website that clinical trials should register with in order to be published in a peer reviewed journal. This gives the study some credibility.

To my knowledge there is only one US study on this website. The one in Albany, NY.

Hi - I made an error. It's www.clinicaltrials.gov

It's a US government website.

The federal government also controls the reimbursement of this procedure through an agency called CMS. They establish the DRG codes for the hospital reimbursement as well as the CPT codes for the physician reimbursement. There is a reimbursement for the venograms presently but not for the venoplasty or angioplasty of the stenosed veins.

There pilot and future pivotal studies are important to learn the safety and efficacy of the procedure. Then groups can lobby the US government to set reimbursement for this procedure.

Once there's a DRG in place for the hospital to get paid, then this procedure will take off like a rocket.

There is another place in the US that is also listed on clinicaltrials.gov
It is Dayton Interventional Radiology in Dayon, OH.
They are also approved by the Hubbard Foundation.
There are more options, so patients do not always have to go out of country to get the treatment.

The study in Albany is free, but you have to live within a 4 hr. drive to be able to participate. The one in Dayton costs $8K and insurance will not cover it because it is a trial. Just an FYI.

Just to make the thread complete, I add the Zamboni's "Brave Dreams"

http://clinicaltrials.gov/ct2/show/NCT01371760

_________________
You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info