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Post Info TOPIC: Who is performing x-linking?


Veteran Member

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Posts: 45
Date: Mon May 14 5:18 PM, 2007
RE: Who is performing x-linking?
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Docs in New Jersey may be offering some form of crosslinking soon.† I asked the doc, and they are not offering it to patients yet, but are researching the equipment and the technique. He indicated that clinical trials will begin shortly in the US.

However, I have been hearing that trials would start shortly in the US since back before January, I wonder if anything will actually begin over here in 2007. But, an approved procedure on the East Coast would be exciting news for US patients, and maybe an approved procedure would be covered by insurance, which would also be great news.

It would be very interesting to get a list of what doctors or medical schools are participating in this clinical trial when it starts in the US. Does anyone know any details on this?

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Joanne in NY


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Date: Wed May 16 1:30 PM, 2007
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Also in Prague they are performing Cross linking at the Lexum Clinic.

Here is the Link: http://www.lexum.cz/index.php?p=en16



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chris


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Date: Wed May 16 3:43 PM, 2007
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How about someone creating a frappr map of locations offering crosslinking, and each map pin can have a link to that clinic's website?

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Joanne in NY


Phase Two

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Date: Wed May 16 4:48 PM, 2007
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Hello guys and welcome,

I read that only the other day. For them to test the UVX Machine they must be testing it on corneas on a bench in a lab and then checking the strength by (one way of doing so easily) holding out the cornea with tweezers

I urge our members here reading this message to pledge their support for them by contacting them and also Dr. Stulting as he lead a group from the US who attended the last Crosslinking Congress in Zurich

Just contact people that would be interested and make the case as some people donít know how valuable it is to us.

In Europe its approved for use and has ethics approval in various countrys. Its not an Experimental treatment for those Dr's who has experiance with it for the longest. There is enough proof and they are using it as routine. There is a lot of old info around and its new to some Dr's so they think it must be new!

BTW use the links button to post links, you can re-edit them.

Jo, there just may be a way to do that, but it will take sometime to get it just right, and is usable with out much hassle. And that picture of your cat is nice but I think reminds us of eyes and trouble with them a bit too much! It's a bit off putting and on the large side!!

-- Edited by QuintriX at 16:51, 2007-05-16

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Veteran Member

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Date: Tue May 22 2:42 AM, 2007
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Folks, Dr. Donenfeld in long island NY told us today at our visit that he will be a participant in the US FDA clinical trials of epi-off crosslinking and expects them to begin in two months. I am not sure what other centers are participating.

Just want to get the word out to anyone who is in the decision making phase right now. He felt it would be another two years at least before crosslinking is widely available in the US, or gets covered by insurance. He also told us that intacs + C3R were the best shot for my son at the time he made his treatment decision, and had high praise for Dr. Boxer Wachler. My son has fantastic improvement in his left eye, and some improvement in his right eye. Will only need corrective lens on the right eye.

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Joanne in NY


Phase Two

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Date: Tue May 22 3:24 AM, 2007
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And why is the Epi off (Orginal) method the one that is going to be used for the trails?

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Member

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Date: Tue May 22 1:53 PM, 2007
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because it has the longest term data that it works.† the other method is newer.

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Phase Two

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Date: Thu May 24 7:57 PM, 2007
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That is exately what I have been saying to new people who has been diagnosed with KC.

Although most/if not, all of that data is from Europe. I hope there will not be any more un-due delay.

-- Edited by QuintriX at 19:57, 2007-05-24

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