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Useful information about Juvenile Retinoschisis

Posted by big_big_eye on 4/1/2009 11:52:51 AM.

Hope to set up this message board to collect useful informaton about this disorder.  It can be useful info from the Internet or medical report or even real experience.  Please share.

There are currently 2 replies.

      

  • 1 . NEI Studies (US only)
    Posted by Phouka on 10/18/2011

    Hi all,

    My son has x-linked juvenile retinoschisis. His geneticist referred us to a study at the National Eye Institute (NEI)--we were able to participate remotely. Essentially, we got genetic testing for free from the government. It's been a while, but I think this is the study we participated in: http://clinicaltrials.gov/ct2/show/NCT00055029

    They're using the study to try to develop treatments for retinoschisis. My contact said they've got a genetic treatment they're hoping to start human trials with in the next few years. I'm not sure if it's supposed to reverse the symptoms or just stop progression--but either way, it's a start!



  • 2 . NEI Studies (US only)
    Posted by Phouka on 10/18/2011

    Hi all,

    My son has x-linked juvenile retinoschisis. His geneticist referred us to a study at the National Eye Institute (NEI)--we were able to participate remotely. Essentially, we got genetic testing for free from the government. It's been a while, but I think this is the study we participated in: http://clinicaltrials.gov/ct2/show/NCT00055029

    They're using the study to try to develop treatments for retinoschisis. My contact said they've got a genetic treatment they're hoping to start human trials with in the next few years. I'm not sure if it's supposed to reverse the symptoms or just stop progression--but either way, it's a start!


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