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Old 31-05-17, 06:26 PM   #1
Allan
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Default All on board for HD-YAS

.
The HD Young Adult Study (HD-YAS)


_____________JUST
_____________DO IT!

.
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Old 02-06-17, 10:22 AM   #2
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Default Re: All aboard for HD-YAS

.
Hi all, I posted this on the Message Board last November but it got no response at all. So, here it is again:

http://hdresearch.ucl.ac.uk/current-studies/hd-young-adult-study-hd-yas

… will examine Young Adult gene carriers, decades before expected disease onset, in order to identify the best time to intervene with therapy. The collaborative team will use brain imaging and novel cognitive tests (CANTAB and EMOTICOM), to determine when the first signs of the disease can be detected.

Here are the 16 cognitive tasks if anyone wants to preview them: www.frontiersin.org/files/Articles/166530/fnbeh-10-00025-HTML/image_m/fnbeh-10-00025-t002.jpg

http://sro.sussex.ac.uk/59620/1/166530_Elliott_ProvisionalPDF.pdf

It now reads:

The HD Young Adult Study (HD-YAS) is an important and exciting study that has been designed to find the earliest time point at which any HD-related changes can be found in young-adult gene carriers, and therefore, the earliest time at which therapeutic intervention could be given to prevent HD-related changes and decline.

To do this we will recruit both young adult gene-carriers who are completely well, and control participants. A control is someone who does not carry the faulty gene.

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Old 02-06-17, 04:53 PM   #3
Crystal
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Default Re: All aboard for HD-YAS

Quote:
Originally Posted by Allan View Post
.
Hi all, I posted this on the Message Board last November but it got no response at all. So, here it is again:

http://hdresearch.ucl.ac.uk/current-studies/hd-young-adult-study-hd-yas

… will examine Young Adult gene carriers, decades before expected disease onset, in order to identify the best time to intervene with therapy. The collaborative team will use brain imaging and novel cognitive tests (CANTAB and EMOTICOM), to determine when the first signs of the disease can be detected.

Here are the 16 cognitive tasks if anyone wants to preview them: www.frontiersin.org/files/Articles/166530/fnbeh-10-00025-HTML/image_m/fnbeh-10-00025-t002.jpg

http://sro.sussex.ac.uk/59620/1/166530_Elliott_ProvisionalPDF.pdf

It now reads:

The HD Young Adult Study (HD-YAS) is an important and exciting study that has been designed to find the earliest time point at which any HD-related changes can be found in young-adult gene carriers, and therefore, the earliest time at which therapeutic intervention could be given to prevent HD-related changes and decline.

To do this we will recruit both young adult gene-carriers who are completely well, and control participants. A control is someone who does not carry the faulty gene.

.
Hi Allan..... Thank-you for highlighting this again.....but, have to admit to only being aware of this 'new' study myself a short while ago.... and clearly didn't pick up on your last post. As many young (adults) seem keen to raise awareness and be more involved these days......my own family included....I am wondering though, that many may not have chosen to know their own status at a younger age....although I hope that in the grand scheme of things, there will still be sufficient numbers to help and thereby follow this particular research pathway forward.

Crystal
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Old 02-06-17, 05:02 PM   #4
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Default Re: All on board for HD-YAS

Hi again Allan

I have just re -read my post.... and yours...and apologies, but now realise I may have mis interpreted the criteria for young adults who can be included in this research! Not sure why I did that!!? Need to be more alert!!

Crystal
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Old 02-06-17, 05:26 PM   #5
Crystal
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Default Re: All on board for HD-YAS

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Hi again Allan

I have just re -read my post.... and yours...and apologies, but now realise I may have mis interpreted the criteria for young adults who can be included in this research! Not sure why I did that!!? Need to be more alert!!

Crystal
Tried to delete my second post Allan!! Hope I'm not confusing everyone else now!! I Do
get the criteria required!! Definitely need to be more alert!!! Not sure what I was thinking!!
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Old 02-06-17, 09:20 PM   #6
Allan
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Default Re: All on board for HD-YAS

.
None of these “trials”, clinical or otherwise, are thoroughly clear to the lay person because they’re often not explained in Plain English.

In this instance, as you stated, it doesn’t seem to have made fully clear that untested hd-family members will not be able to take part. They seem to want HD+ but non-symptomatic youngsters and HD- youngsters ... if I’ve read it correctly.

HD+ Individuals who carry the HD gene (HD Gene-Carriers)

HD- Individuals who do not carry the HD gene (Controls)

? Individuals who do not show any clinical symptoms of HD

It also states: You cannot take part in this study if you do not know your HD genetic status i.e. if you are at-risk of developing HD

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Old 03-06-17, 08:18 AM   #7
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Default Re: All on board for HD-YAS

I'm confused so probably a good thing we're way too old!! Morning all...
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Old 03-06-17, 10:38 AM   #8
Gabby
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Default Re: All on board for HD-YAS

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Originally Posted by Allan View Post
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The HD Young Adult Study (HD-YAS)


_____________JUST
_____________DO IT!

.
Its just one appointment some of us older non hd including myself as a control and Hd people have already done this for other studies the cerebral fluid collection is a piece of cake and Mri's are painless if you can help its well worth
it .

Gabby x
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