Actually, I do see several big problems with the "demand" that clinics doing the procedure should do the data-gathering regarding efficacy of the procedure so that people can make decisions about the procedure:
1) They would automatically be considered to have a conflict of interest
Big pharma also sponsors clinical trials. The goal of collecting this data would not be for FDA approval, it would be simply to help us decide what to do, how to improve procedure, whom this procedure would help, etc.
Why we do not have conflict of interst, today? You call up a clinic for procedure and the doctor tells you to come...
2) Many people are NOT going back to the same clinic for follow-up testing, either because it is too expensive and/or a nearer facility has opened up. Therefore you would not be getting a representative sample.
That is the reason why local people should be gathered as well. It is easy here in European countries. to travel. If the original price includes follow-ups, then everyone go for it. Just about prices: In East Europe, a Doppler is about 10 dollars, a one hour consultation with a doctor (e.g. neurologist) is about 50 dollars. The CCSVI operation's cost is about USD 2,000. So, don't you think that the USD 10,000 in East Europe should cover what I outlined here? Every MS patients would benefit from this data.
3) Many neuros don't want to be involved.
I think you always have that money...
Neurologists are also human beings, even if we sometimes think it differently...
I can tell you that in many cases IRs checked these clinics that I mentioned with the intention that their hospital from state money do the operations, but because of the poor data they found there they gave up on their intention.
East European countries are small countries, doctors (neurologists and IRs) are talking to each other, they know each other. Neurologists can not hear convincing info from independent IRs. I was referred to MRV by my neurologist, I did not even have to ask for it. It was done for free.
Some (perhaps all) of these clinics are gathering post-procedure results data, but it's not clear to me how these results would be more useful than what we can get from ccsvi-tracking.com, which some people have already denigrated on this thread (with poor reasons, in my opinion).
I would not put my life on data gathered through a survey, mainly if there is a better way that can be easily done. And do not forget that follow-ups would be needed for us who went through the procedure not just for data gathering.