Why is there so much resistance to ensuring that MS Patients have adequate blood flow in their heads?
you do not have a monopoly on foggy thinking
My question (thinking outloud here) at what point is a procedure considered "non" experimental and / or safe? Is it a certain number? Certain number without complications? what? and why would ins. companies pay for experimental procedures/treatments?
Research for what? To see if its related to MS, this is a vascular issue. Or research to see if CCSVI can be done on veins? Which I believe ballooning is being done on veins daily around the world. Plus volumes of research has already been done on CCSVI. I am just tired of getting that word research thrown in are faces. Not directed at you. I understand you are just a messenger at this point and your hands are tied.
I would be honored to lead this patient based research project if the group wants. Of course, I would have to run it through the Downstate IRB.
Wouldn't that be a kick in the ass. to have you guys involved in an IRB sanctioned project!
why does this "research" even have to mention MS? What's been discovered is a new way to image and treat venous malformations and measure their effects on various functions. A certain set of symptoms seems to indicate that a venogram makes sense, just the same way that thousands of otherwise healthy adults are given catheter procedures because they have "chest pains"
I suppose the big question is how long of a delay is it until the IRB has a chance to look over and (hopefully) approve all of this? Also, and I don't think you can really post this, but if there is a sense that they are likely to approve it and this is just a formality or if there is some true fighting that you will be doing to keep these procedures going.
Wow... an IRB approval appears extremely complicated, labor / time intensive and potentially costly?
Any best and/or worst case guess how long it may take (assuming you are pressing forward with clinical research)? Any chance of getting an exemption? or even Quality of Life trial? Expedited review?
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