MS Research - RTL 1000 Study Question
Submitted by Ka7thy on Tue, 2008-01-22 07:26.
Question: Would you participate in the (below) research study for MS if you knew that your symptoms could worsen?
RTL-1000 is a double-blind study for those having R/R and S/P MS - 18-65 yrs old, no pregnancies or breatfeeding allowed. No exacerabations within 8 weeks.
Patients must have the genetic marker of HLA-DR2 to be able to participate in the study. This information is obtained by having a mouth (or buccal) swab done at the research center.
That is how most studies are
That is how most studies are in the US. When you sign the consent agreement, you acknowledge that you might feel worse or you might feel better. There are no guarantees in clinical trials.
Trial has been recruiting
Trial has been recruiting for awhile (how long does it take to find 30 ppl?!?!) If I tested for that gene I would probably go for it.
http://www.king5.com/health/stories/NW_080307HEK_MS_drug_RTL1000_LJ.dcb406fb.html
I have SP M.S. and was
I have SP M.S. and was tested for the 'gene' but came back negative.
I 'was' going to participate, but since I do not have the genetic 'marker', I'm not eligible, darn it, anyway!
I hope this study proves to be as effective as it has shown in mice studies.
Kathy
Kathy, I hope so too. I
Kathy,
I hope so too.
I tested positive and just got my 'dose' on Monday. Nothing to report yet.
Steve
The genetic marker of
The genetic marker of HLA-DR2 appears in about 50% of the population, so chances of obtaining willing candidates is 50/50. It is thought that patients with MS have this genetic marker, but that is not true in regards to my MS. Interesting!
I thought they were looking
I thought they were looking for people that had either HLA-DR2, or the HLA-DR4 markers, which would be about 75% of the MS population.
My consent form only told me
My consent form only told me that I would have to show positive for the HLA-DR2, not the DR4.
I'm on an MBP8298 trial that
I'm on an MBP8298 trial that supposedly works on DR2 or DR4. But they ain't sure till the trial's over.
-Chris Sullivan
Hello. I would join a
Hello.
I would join a study if it was something I needed. I've been fighting MS for over 15 years and have tried (without luck)just about everything that is availble. So why wouldn't I?
As with any study, I think that you must always think about the results and consequences. I doubt that if something was causing everyone bad things to happen that they would have a study for it. Why bother.
After researching RTL 1000 I called the MS Center at Evergreen Hospital, Kirkland, WA and asked to join the study. I was tested for the HLA-DR2 marker and tested positive. The entile process took several months.
I was accepted to the study and I was actually given 'something' this week. I'm still kicking. I did have some minor things happen after getting my 'dose' (little heat flashes, pretty strong nausea for about 30 minutes, ensomnia the first night) but nothing else major at all. I doubt that a sugar water placebo would have caused the responses I had.
Also, you only need to test for HLA-DR2. You must also go through several other tests, blood draws, ECG, 2 MRI's, chest x-ray and of cource, a pee test.
By the way, they do verify you have MS.
Please keep us updated on
Please keep us updated on your progress; along with any long term side effects.
Thanks for the knowledge!
Kathy
Will do. So far so good. I
Will do. So far so good. I haven't had any short-term effects after the first 48 hours. Long-term ones I will certainly pass on. One long-term effect I would like to see would be me tossing my cane because I don't need to use it anymore... :)