CCSVI Patient Registery

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

CCSVI Patient Registery

Postby SammyJo » Tue Apr 27, 2010 8:25 pm

Dr Sclafani,

Maybe this would work for the patient tracking/registery?

4) We also request that you join so that we can all share each others' clinical outcomes and provide much needed research results. Although this does not take the place of Big Pharma or Big Government multi-million dollar studies, we think it will be a great start. The PatientsLikeMe site is used by research organizations to collect data on large numbers of patients. The MS section alone has 18,000 members. It is easy to post your history, symptoms, and treatments and it shows your progress in graphs. Under "CareGivers" please invite "HubbardFound Database" so that we can communicate with you and keep track of your success.


I know the results of yours and other doctor's trials and published results are what will win medical minds, so I don't know how useful the registery would be to the research. It does help patients to evaluate treatments, I have my profile there (link) and I put stents as an MS treatment.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 |
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