I will be looking forward to a blog post from you, Marc, summarizing all of this! There is so much to dig through.
Yes, I remember that Parkinson's research. Surprising results.
For what it's worth, there has also been recent research showing little difference between placebo and untreated groups:http://www.nejm.org/doi/full/10.1056/NE ... 5243442106http://onlinelibrary.wiley.com/doi/10.1 ... E01.d02t04
I am not sure what to think. And a sham group comes at the cost to the patient, of not being treated, potentially for up to two years, and of undergoing the risks of angiography without the benefits.
In all honesty, I'm not sure how to present the presentations given at ISNVD. Most of them seem to be recapping older research, I don't see much new here that jumps off the screen. Perhaps some of the outcome studies, but the findings seem quite disparate, therefore hard to draw any conclusions from them. We seem to be stuck in a lull as far as insights into CCSVI goes. Patients haven't been tracked, so we have little new info on mid to long-term outcomes. We still have the same old problem with high rates of restenosis. Both MRV and sonography seem riddled with room for inaccurate readings. IVUS seems to be a clear step forward, but has met with resistance from IRs. We have the valve only vs. whole vein argument, which seems far from resolution. We not only have disagreement between the different disciplines, but also within the IR community itself.
It's all really quite frustrating. Despite the problems with blinded studies, in this case some of way to do them really must be found. We're not just talking about trialing a new surgical procedure, but trying to ascertain whether or not CCSVI is a standalone syndrome, connected to MS, connected to a variety of neurologic diseases, or simply a natural variance that just hasn't been looked at previously. We've seen lots of studies on patients with MS, with results scattered all across the spectrum. What we really need are studies of healthy controls, to ascertain the prevalence of CCSVI in the general population, and to try to get a handle on the variables that come together to make CCSVI a part of the MS puzzle. I think the postmortem studies hold the most promise in this regard (ascertaining the rates of CCSVI in healthy subjects), and I hope that Dr. Fox is building a more robust database over time.
I think I'm going to do a "State of the Union" type post about CCSVI, simply summarizing where we are right now in regards to research, treatment effectiveness and availability, and emerging themes.
We should get some decent data from the seven ongoing MS Society funded trials, which are due to report their two-year results in June or July. Based on their 18 month results, though, most of the studies won't be finished at 24 months. Still, they should have some hard data to report. Of course, since they were funded by the MS societies, if their results are anything but a validation of CCSVI, there will be suspicions of conspiracy.
Unfortunately, rather than increased clarity, in some ways the picture seems to only be getting more muddled. For whatever reason, I get significantly more e-mail from blog readers that have been disappointed with their treatment outcomes than those who are satisfied. Some even blame me for "pushing CCSVI treatment", something I have really tried to avoid doing. I guess some people read what they want to read…