Hi Maggie- Where are you out there, if I may ask? I'd also like to hear from others about where COEs are needed. Robiby robi - Huntington's Disease Support Center
Hi jl- Try this link: Robiby robi - Huntington's Disease Support Center
Read "Gene Veritas":by robi - Huntington's Disease Support Center
For the record: www.medicalnewstoday.com/articles/45435.phpby robi - Huntington's Disease Support Center
There is a very interesting (and disturbing) article about the cost and quality of US healthcare - which varies a lot! - in a recent edition of The New Yorker Magazine. You can read it here: www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande Robiby robi - Huntington's Disease Support Center
Hi RJ- The press release announced that the trial just finished enrolling the last subject to START the trial. That subject will spend 26 weeks (about 6 months) in the trial, add a few months to analyze the data - results might be available around the end of this year. Robiby robi - Huntington's Disease Support Center
Hi all- Here's some news about the European counterpart to the HART trial: www.neurosearch.com/Default.aspx?ID=3&M=News&PID=91&NewsID=15727 This press release says: "To date, 80 patients who have completed the 26 weeks of randomised treatment in MermaiHD have elected to continue in the six month, open-label extension to the study, and the first patients are approachinby robi - Huntington's Disease Support Center
Hi Maggie- Thanks for becoming an "HD correspondent" and reporting on the experience you and Tony are having in the HART (ACR16) trial. Your dispatches from the front (so to speak) will help people get a better understanding of what it means and feels like to participate in clinical research. Hopefully your words will encourage some people to follow your example and sign up as well.by robi - Huntington's Disease Support Center
Hi all- First, I would like to say a big "Thank You" to everyone who posted in response to my original thread about Participation in Clinical Research. I would also like to say an especially big "THANK YOU" to the people on the ACR16 Trials thread who considered participating in that trial: Tony & Maggie, and carlaj (for her son). I hope people reading this mesby robi - Huntington's Disease Support Center
Hi all- LaVonne Goodman has written an important article entitled "Why We Should Bother with ACR16" about participation in clinical research generally and, in particular, the currently enrolling trial of a drug called ACR16 being conducted by a company called Neurosearch and the Huntington Study Group. You can read the article here: "; Some people have expressed concern thby robi - Huntington's Disease Support Center
Hi Barb- Thanks for the feedback - it's very helpful. First let me apologize for the fact that someone did not get back to you right away. Just about everybody involved getting HDTrials.org up and running (Fred, Marsha, LaVonne, me, etc., etc.) was busy attending the HDSA Annual Convention this past weekend. In fact, the rollout of HDTrials.org was timed to coincide with the Annual Conventiby robi - Huntington's Disease Support Center
Hi List- When you contact your Senators and encourage them to support GINA, PLEASE ALSO ask them to ensure that GINA contains very clear language protecting people who participate in clinical research from discrimination. This is very important to our community's efforts attack HD at its very earliest stages - when people are showing little or no symptoms. Thank you, Robiby robi - Huntington's Disease Support Center
Thanks so much to everyone who is trying to help with GINA. A number of people on this thread (and the previous thread on the same topic) made the point that we also need research. THESE ISSUES ARE RELATED. I can't help saying that with emphasis. We need a GINA that covers clinical research. Please make that point to Senator Coburn and anyone else (including other disease organizations, theby robi - Huntington's Disease Support Center
Hi all- GINA is good (in fact, very good) as far as it goes. However, there is an important loophole that hurts HD research in particular - GINA as drafted does NOT prohibit discrimination based on knowledge about a person's participation in clinical research for genetic diseases. Here's the scenario: An employer discovers that an employee takes a personal day to participate in something cby robi - Huntington's Disease Support Center
Hi Eric- Thanks for the thoughts. This is a delicate area and we need to be careful here. As you know there is some data to the effect that pHDs may be less aware of their chorea than third parties, eg, caregivers. The FDA may (and I am speculating here) be concerned that the chorea is more distressful to, and more affects the perceived quality of life of caregivers than the patients themselveby robi - Huntington's Disease Support Center
Hi list- I don't think the FDA needs letters from people who have used tetrabenazine. They have the data from the trial about the benefits and side effects of TBZ itself. What they really need are letters from from people who can talk about the adverse effect of having chorea on their quality of life. The FDA might not appreciate how much chorea adversely affects patients' quality of lifeby robi - Huntington's Disease Support Center
Sorry Jimmy, I am Canadian. Robiby robi - Huntington's Disease Support Center
Hi all- I would like to thank (and encourage) everyone who contributed to this thoughtful thread. It is very helpful to our efforts to find treatments for HD to have more insight into how the disease is understood in the community. Robiby robi - Huntington's Disease Support Center