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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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SammyJo
 Post subject: CCSVI Patient Registery
PostPosted: Tue Apr 27, 2010 9:25 pm 
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Joined: Wed Mar 10, 2004 4:00 pm
Posts: 197
Dr Sclafani,

Maybe this would work for the patient tracking/registery?

Quote:
4) We also request that you join www.PatientsLikeMe.com 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.


(link hubbardfoundation.org)

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.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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