rusty2 wrote:I tried to get into Dr Burts trial a couple of years ago. I had 2 steroid treatments in a year but still didn't qualify. Just sayin.....
I'm sorry to hear you were rejected, Rusty. Although I don't know the exact stats, I would bet that it almost certain 99+% of the applicants to Burt's trial are rejected, just as I was rejected in 2008 (because I've never taken steroids that offer no change in the long-term clinical manifestation and outcome of MS). Burt's trial inclusion/exclusion criteria is so absurdly narrow that it's difficult to imagine anyone at all being admitted to the trial. Remember that clinical trials are not designed to help individuals. They are designed to test & prove hypothesis in the context of a population, which is often a shame because HSCT has overwhelming probability to have curative benefit for MS patients with all forms of the disease (RR, SP, PP). It is well known that HSCT works 'best' for rapidly evolving RR cases so the trial restricts patients to this category. No slam on Burt (he's a very good doctor & researcher), but this approach allows him to look like a superstar showing how outstandingly well the therapy works for such cases. Unfortunately in the wake the progressive cases are left behind and untreated. The good news is that once FDA-approved (sometime around 2020, or just after), HSCT will also be available in the US for progressive cases, too.
For Burt's HSCT trial out of the tens-of-thousands of people who apply, they only need to get a very small fraction enrolled. I imagine they don't have to beg for applicants because they can cherry pick the ones they want without having to expend a lot of effort.
This is why I was especially happy to pay for my HSCT treatment outside of a trial. I found three main advantages in going this (non-trial) route:
1. Much easier & simpler to be admitted for treatment.
2. No (50%) chance of being randomized to the control arm of the study and not receiving HSCT.
3. No requirement or need to participate in onerus & lengthy study follow-up participation. Once it's done, it's done.
Just have to pay for the procedure (which is understandably a huge hurdle for most people). So I have been compiling a list of facilities that will provide HSCT outside of a clinical trial. I update this list each time I learn of a new facility willing to perform HSCT. . . . http://themscure.blogspot.com/2011/06/g ... -have.html