Your data counts, register now.

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

Your data counts, register now.

Postby Cece » Thu Jan 27, 2011 4:33 pm

http://www.hubbardfoundation.org/

click on CCSVI Patient registry


Insist on Your Data Being Counted!

You should be able to get tested and treated for CCSVI in your hometown! We also have an IRB approved Mulit-Center Registry for Interventional Radiologists, but so far there are only a few national sites fully credentialed. Until treatment becomes standardized, the only way to know the best way is to collect data on the different techniques different IRs are using; presently every IR is treating differently, there is yet no standardization. You can help us and your community answer these important questions and quickly.

What symptoms are most likely to respond?
How often are stents being used?
What sizes of balloons work best?



Email the Hubbard Foundation and ask for the Patient Registration Packet to be mailed to you. This packet includes paperwork for you to fill out to add yourself to the Patient Registry, and paperwork for your treating IR to fill out regarding your CCSVI testing and treatment. Additionally, copies of forms to be completed at 1, 6 and 12 months post-treatment are included in the back. Your data will be used anonymously to ensure patient privacy. Your data counts, register now.

This is a new patient-centric registry with IRB approval. :D
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Postby hannakat » Fri Jan 28, 2011 10:30 am

I can't wait to see the results of this. Hopefully, everyone who had the treatment over the past year and more will participate to build the registry and information as fully as possible!
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Postby ThisIsMA » Tue Feb 01, 2011 9:54 pm

bump!
DX 6-09 RRMS
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Postby Cece » Tue Feb 01, 2011 10:21 pm

hannakat, it can only be done by patients getting their treatments now and from now on, because there's a sheet to be filled out by the IR during your appointment and a baseline patient MSIS test to be filled out and follow-up ones too.

But what this means is that anyone going in for treatment from now on who contacts the Hubbards and gets the email packet and follows through is a really awesome human being contributing to the furthering of CCSVI research through their own data.

Any takers? This is for anyone getting their treatment done anywhere. You do not have to be going to the Hubbards to get this; it can be done by the IR you have chosen wherever he or she is. The more data they get, the better. I am not kidding about the awesomeness of being involved in this.
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