About Multi-Center Registry

About
The CCSVI Multi-Center Registry, sponsored by the Hubbard Foundation, collects the
data after patient identifiers have been removed, analyzes the data
and reports the findings. The primary purpose of the registry is to
collect information on how common CCSVI is, and whether MRI and
clinical changes occurr. Data collection and analysis is managed by DataSense LLC.

CCSVI Registry Update (10/2011)

The CCSVI Registry has 25 sites around the United States, and as of October 2011, there have been 282 patients enrolled.

Although we do not yet have 12-month follow-up data and only a few patients with 6-month follow-up data, we can report there have been no deaths, three hospitalizations, and a total of 10 AE's coded as “moderate.”  

Additional Information
On Sept. 2 the Hubbard Foundation received final, non-conditional,
national IRB approval for testing and treatment of CCSVI (chronic
cerebrospinal venous insufficiency) at locations around the U.S.

Several IRs around the country have treated a few patients without IRB
oversight and without objective testing before treatment or on-going
follow-up after treatment. To date hospital and university IRBs have
halted this practice at the request of their neurologists on the
grounds that patients may be susceptible to false claims and misguided
expectations. A few IRs do not work in hospitals, are not under
hospital jurisdiction and are proceeding in an uncontrolled fashion.
Over time neurologists will likely abandon their resistance and begin
referring their patients for CCSVI testing and treatment. Hopefully
these neurologists will insist on objective testing before treatment
and adequate follow-up thereafter, even if they do not participate in
the IRB-approved Multi-center Registry.

CCSVI LOCATIONS- Click HERE

CLICK HERE to be redirected to the new web location for information on the CCSVI Multi-Center Registry.