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?
Users browsing this forum: EJC