Maybe this has already been posted, but I think the coenzyme Q10 study in premanifest patients is starting. Here's a link if you want to check it out: [www.huntington-study-group.org]

Looks good, what's with the Pre-manifest HD, can't they just say people who've tested positive but currently have no symptoms. I realise that means typing more words but I get lost in all these confusing words!

[www.hdyo.org]

It's so you can have a pre-manifestival Matt! Not to be confused with a pre-womanifestival.

Now you've completely lost me

[www.hdyo.org]

I suspect there's a reason that they are using the term premanifest. We need a term that recognizes that changes are occurring before official onset. First, because thanks to Predict-HD and Track-HD, we know this is true. Second, because we need to have a way to show that drugs can be effective during this period. The FDA will not allow a drug to be marketed as something which prevents the development of a disease. They won't let it go beyond "postponing onset." The reason for this is because you can never actually prove that. Suppose they develop a drug that stops people from ever developing symptoms of HD and you take it, Matt, and stay healthy for decades. So there you are at 99 on your deathbed, surrounded by your healthy great grandchildren, dying from injuries sustained while skydiving, let's say. You would think that would prove the drug to have prevented HD, wouldn't you? Not according to the FDA because what if you didn't die from an injury at 99? Just maybe you would have developed HD symptoms at age 100.

So the term premanifest recognizes that people are not currently sick but also allows for doing trials to see if drugs are effective again the changes that will eventually lead to the disease becoming manifest.

Which is fine, but when they're after people to join trials I think it confuses the community about who exactly they want to participate. I understood what they said, I realise what they mean by premanifest, but I would catch on a lot quicker if it simply said HD positive.

I think you risk losing potential participants if they get confused by the text. If it was simple to understand what the trial was about or what the study wanted more people would join. Least that's what I think

Edit: I'm not talking about this study, I'm talking generally about all research studies.

[www.hdyo.org]



Edited 1 time(s). Last edit at 02/18/2010 09:17AM by just1moreperson.