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.