Hi all-

Here is a very interesting new review paper by Jane Paulsen, the principal investigator of the PREDICT-HD study:

[www.medscape.com]

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

Does anyone have a good summary of the paper?

Thanks,

BJ

Thank you. I skimmed parts of it as it is quite comprehensive.

Thanks for sharing this Robi.

BJ how many free throws do you think you could drain in the time it took me to read this? I will not ask, in the time it will take me to understand all of it.

-Brett T

PS if anyone is up for telling us caveman what this means I would not mind, either.

I cant even get the article, says i need an account. Robi, can you tell us what this was about?

Try this for a summary. [www.predict-hd.net] Click on the Adobe icon to open the newsletter at the top of the page. It gives a layman's version of the progress made in Predict-HD.

I'm not brilliant, btw. I just remembered I got this in the mail recently as a past participant.

Will

Hi Barb-

Signing up for an account (somewhere on the page there) is free. That's what I did.

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

Thanks to Robi and Will for the updates on Jane's research.

This study is so important. I was listening to a presentation by a Marcy McDonald who showed the number of measures that started significant decline 10 years before outward symptoms of HD. So obviously serious damage to the brain starts years before classical onset.

Call me crazy, but it sure seems that starting treatment at least 10 years before onset will be the only way to prevent or delay the serious brain damage caused by HD.

Jane's research is building the foundation for early diagnosis and treatment of HD. Instead of a 15 year duration from onset to death we are able to better manage a 30 year duration. (i.e. starting treatment earlier and more seriously).

Instead of treating HD as a movement disorder it is finally going to be recognized for what it actually is - A movement, cognitive and psychiatric disease. Wouldn't this have been nice for the social security administration to have had back in the 60's? (we wouldn't need HR 678).

Steve I

What we did not have "back in the 60s" was a DNA test. We had to wait until 1993.

jl

You also didn't have me back in the 60's either, so really was a dull decade.

Thank you Jane for working so hard for our cause. I will share this on the HDA forum.

[www.hdyo.org]

Go ahead - Matt - rub it in!

Why don't you go run a k or two....................

jl

I am actually about to go for a 5 mile run

[www.hdyo.org]

I thought you Brits used kilometers rather than miles.

Next you'll be telling me is that you've taken to driving on the right side of the road...............

jl

We use Miles and yes, we drive on the right side of the road... Americans drive on the wrong side

But we're getting way off subject.

[www.hdyo.org]

Steve, how does anyone know it's "10 years before the onset" ?

Use the CAG charts?

The CAG charts are used to estimate time to onset in the Predict HD study because it's a large study and the variations average out, but as we know, the CAG count doesn't predict on the individual level. To know when to start treatment for someone when treatments are available, they will probably look at brain scans, look for a marker of DNA damage, and/or some subtle changes in cognition.

Of COURSE the DNA test (and the CAG repeats they reveal) diagnose on the "individual" level.

That's why they're so accurate!

jl

Jl, that's not what Marsha is talking about. Marsha is not talking diagnosis, she is talking prediction of onset of symptoms.

Well, from everything I've heard and read, the DNA test is a much more accurate measure of that.

"CAG charts" were mentioned. CAG charts are simply a compilation of individual CAG repeats - and you cannot know one's CAG repeat, unless a DNA test is done.........

A compilation (and analysis) of data is only as accurate as the data it's based on.............

jl



Edited 1 time(s). Last edit at 03/27/2010 11:18AM by jl.

The CAG charts which show average age of onset and the range of onset show that the CAG count is only one predictor of age of onset. On average, the larger the CAG count, the sooner HD can be diagnosed in a clinical exam. However, there can be a range of as much as two decades for the same count. One person with a particular count may become symptomatic at 30 and another at 50. This is because there are other genetic factors that influence age of onset and environmental factors come into play as well. We know this because identical twins (who have the exact same genetic inheritance) can have different ages of onset.

One issue that will come into play when we have treatments is when should they be started? We don't want to start too soon because no drug is free of side effects but at the same time we would want to start as soon as there are signs that the disease is beginning to cause changes in the brain. One's CAG count won't be enough to determine that. My guess is that brain scans and biomarkers and perhaps some subtle cognitive tests will be used to determine that. That's why Predict-HD and COHORT are so important.