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Thread: Tissue samples being sought from persons who have had a brain biopsy

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    Distinguished Community Member agate's Avatar
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    Default Tissue samples being sought from persons who have had a brain biopsy

    At least one person here mentioned having had a brain biopsy at some point--I'm not sure who it was. Anyone who has already had a brain biopsy in connection with an MS diagnosis might want to look into this study.

    From the MS Discovery Forum newsletter, January 13, 2015:

    MS Research Study Alert: Did You Have A Brain Biopsy To Confirm Your Diagnosis? Investigators Seeking Tissue Samples Previously Obtained from People with MS and Similar Diseases

    18 DEC 2014
    CYNTHIA MCKELVEY

    From the National MS Society:

    Summary:

    In order to discover the triggers of MS, National MS Society-funded investigators at the University of Utah are seeking to collect existing brain biopsy tissue from individuals nationwide who underwent a brain biopsy to diagnose an episode of “acute demyelinating disease,” including multiple sclerosis, acute disseminated encephalomyelitis, optic neuritis, or clinically isolated syndrome. The researchers will arrange for the transfer of the tissue. No visits to the University of Utah are needed.

    Please note: The investigators are not asking people to obtain brain biopsies. They are seeking permission to study biopsy tissue already obtained for the purpose of diagnosis. Individuals agreeing to participate will need to sign informed consent agreements; this can be done on the phone, by mail, or by email. Clinical information relevant to the study will be collected over the phone, by email, or through other electronic methods.

    Rationale:

    University of Utah School of Medicine researchers, led by John D. Kriesel, MD, are looking for signs of genetic material from viruses in brain samples from individuals with possible early-stage MS to identify a possible trigger of the disease. The study, funded by the National MS Society, focuses on people at this early stage to improve chances of identifying a possible disease trigger.. If successful, this study could spur new diagnostic strategies, new treatments, and even strategies to prevent MS.

    Eligibility and Details:

    This group is collecting and studying brain tissue samples that have been previously obtained, and are usually stored in a hospital pathology department. No visits to the University of Utah Hospital are needed. Informed consent for participation is required; this can be done on the phone and by mail. Clinical information relevant to the study may be collected over the phone, by email, or through other electronic methods. If a microbe (bacteria or virus) is identified, the results will be reported only through a treating physician. This is academic research which is voluntary, confidential, and not for profit, approved and supervised by the University of Utah Institutional Review Board. No compensation will be provided.





    Contact: To learn more about this study, and to find out if your existing tissue sample can be used by these researchers, please contact Bryce Moulton, at (801) 587-3831 or bryce.moulton@hsc.utah.edu.
    Last edited by agate; 01-14-2015 at 01:35 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    News to me - I thought you had to be dead before they did a biopsy of the brain! Shows how stupid I am.

    Anyway, thanks for posting Agate, but I do not think I will participate. I have not already had one or scheduled one.
    Virginia

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Virginia View Post
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    News to me - I thought you had to be dead before they did a biopsy of the brain! Shows how stupid I am.

    Anyway, thanks for posting Agate, but I do not think I will participate. I have not already had one or scheduled one.
    They don't want anyone to rush out and have one. They want people who already happen to have had one done. Every once in a while someone with MS has a brain biopsy done. (Doesn't sound like any more fun than a spinal tap.)
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Sounds like a lot less fun to me. I had a spinal tap and that was not so bad, but please let's leave my brain alone.
    Virginia

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    Distinguished Community Member Howie's Avatar
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    I'm signed up to give brain tissue for MS research when I die. I carry a card instructing whoever finds me to call a certain number.
    Roswell was a gift.

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    Good for you Howie. I am glad to hear you think they will find a brain. Just kidding, of course!
    Virginia

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    Come to think of it the above post probably should have come from Vicky!
    Virginia

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    Cool

    Me be shmart, me have big bwain, me feelings been hurt!
    Roswell was a gift.

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    Howie be shmart!


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member Howie's Avatar
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    Vicky, where did you get that picture of me?
    Roswell was a gift.

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