|Tracking site for CCSVI treated patients|
|Members: 1418 Participants: 919 Treatments: 748 Months: 10149||About us||-||FAQ|
CCSVI-Tracking is an initiative of a group of volunteers who met on an early forum on CSSVI. Most of the volunteers suffer of MS and have had CCSVI treatment with results that vary from none to substantial positive effects on MS related symptoms. The group is fully independent and has no ties with medical specialists or the pharmaceutical industry.
The motivation for creating the possibility to record the effects of the CCSVI treatment comes from the mostly strong resistance and sometimes hostile attitude toward the treatment from the medical and pharmaceutical MS establishment. This attitude deprives MS patients worldwide from the often very positive results of the treatment.
We feel that collecting long term data on the effect of the treatment directly from patients and publicizing results will foster the acceptance of the treatment within the medical society and stimulate the funding of the treatment and related research by governments.
This independent information from treated patients is also important for MS patients who are considering having the treatment and want to assess the possible outcomes.
There has been considerable preparation involved in setting up the tracking site. Volunteers with technical skills as well as with a background in social sciences have been involved to ensure that the site collects as much relevant data as possible and at the same time is practical to use. Several medical specialists have been consulted in the preparation phase.
CCSVI-Tracking shows the effect of the CCSVI Treatment in MS patients in personal and aggregated graphs. Participants can view their own graphs, graphs of other participants who allow that and aggregated graphs of all participants.
The site has a team of administrators to assist in the registration process and the filling in of data. The site has been open for participants since August 17 of 2010.