I had sucess in actually getting through to someone doing COHORT. McMAster isn't, and tthe closest place for me is Toronto but I've never liked the addictions people.
The lady I had contacted in Mtl never got back to me, but yesterday I got through to Helene Turcotte who has replaced her.+To sign up for COHORT in Montreal phone 514-890-8000 ext 26524.
Two neuros are doing it who both knew and respected dr. Barbeau. My files from Dr. Barbeau are there along with the rest of my family, and they will pull them up when I get there. I finally feel like I'm not wasting my time having HD.
exhuberantly
DustyYesterday

I would say your a wee bit excited db

I am really excited about this, Dusty! I agree that you are not wasting your time. The researchers are going to learn all they can about the progression of the disease so that they know when a treatment really works and can find out quickly and get it to everyone. Biomarkers which serve as surrogates for the old United Huntington's Disease Rating Scale are the key to shortening trials. And this study will also tell researchers a lot about when to start treatments in the presymptomatic.

Another thing I like about this study is that it is open to everyone in an HD family, spouses too. That way a couple can do this together.

And there's a great new computer system that goes with this so that the data gets entered promptly (as opposed to, well the study is over, where the heck did I put Dusty's file, gotta send her data somewhere). That way the data can be analyzed right away the minute the study is done or at key points.

AND, here's another good thing! Biological samples will be stored so that if a good biomarker is discovered down the road, there's no time wasted, they'll just go back and test previous samples.



Edited 1 time(s). Last edit at 11/22/2007 01:58PM by Marsha.

Dusty I agree w/every word that marsha has said!!!!!!!!!!!
and I do know how your feel, once you get envolved in a research project it seems to somehow bring a new light to everything--not that we have found a cure, but that we will be the process to one!!!!!
Conrats to you !!!!!!!! And HD has a new research advocate on our side.
talk soon
deb

Good for you Dusty! You never give up. I've known you six years and you just keep on going. You are amazing!

Paula

Good for you Dusty, that's where I go for my COHORT too. The doctors there are wonderful and the support staff as well.

God Bless
Pam



Edited 1 time(s). Last edit at 11/24/2007 03:46PM by plej.