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Thread: New national MS registry announced by US MS Society

  1. #1
    Distinguished Community Member agate's Avatar
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    Thumbs up New national MS registry announced by US MS Society

    A national MS registry (for the US) has been launched by the National MS Society. If you're interested in finding out more, here's a link:

    https://www.corrona.org/registries/u...is-ms-registry

    Also this, from PR Newswire:

    https://www.prnewswire.com/news-rele...form=hootsuite
    Last edited by agate; 10-21-2017 at 05:07 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #2
    Distinguished Community Member agate's Avatar
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    Well, Howie and maybe others, you have to have a neuro to be part of this registry. I'm going to sign up for it if the neuro agrees. Might as well contribute something to science by being studied, as long as I don't have to take anything. Or go anywhere. Or lay out any funds.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3
    Distinguished Community Member Howie's Avatar
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    Thumbs up

    Quote Originally Posted by agate View Post
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    Well, Howie and maybe others, you have to have a neuro to be part of this registry. I'm going to sign up for it if the neuro agrees. Might as well contribute something to science by being studied, as long as I don't have to take anything. Or go anywhere. Or lay out any funds.
    Then what's the point, to know how many are willing, or able to register, and justify giving the survey takers paychecks? And I just ate, and am still grumpy, but think how bad I would have been without a good meal!
    Roswell was a gift.

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  7. #4
    Distinguished Community Member agate's Avatar
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    This is what the welcoming e-mail had to say:

    Our registry collects data from both patients and their neurologists. As such, we contract with neurology practices and they enroll eligible patients in the registry. If you are interested in participating, please pass our information (along with your interest) to your neurologist.
    Seems a bit odd because many with MS don't have neurologists. They go to their family doctors or internists but they still have MS.

    An MS registry isn't capturing all of the people with MS if it limits its registrants to patients of neuros, seems to me.

    The person in charge of it happens to be a neurologist.

    And I just ate, and am still grumpy, but think how bad I would have been without a good meal!
    That's a thought I'd rather not have. Hope you have plenty of food to last through till November 3.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #5
    Distinguished Community Member Howie's Avatar
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    Cool

    That pasta I made today will last until Nov. 3rd, maybe beyond. I used the really small macaroni style noodles, and really lean ground turkey. It was good, and ALMOST put me to sleep, but I bounced back.

    I've already started my shopping list for next month. I've paid all my bills, and even gave $10 to Wikipedia. And I have more left over than I usually have. I've triple checked, and it all worked out. I'll take it!
    Roswell was a gift.

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  11. #6
    Distinguished Community Member agate's Avatar
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    Don't let it burn a hole in your pocket. The 3rd is a way off yet.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #7
    Distinguished Community Member Howie's Avatar
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    Cool

    Here's how I count the days until payday. Today is over, so it doesn't count. And payday just requires a wakeup, so there are 9 days until payday, one week and 2 days. It's all downhill now!
    Roswell was a gift.

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  15. #8
    Distinguished Community Member agate's Avatar
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    But Howie, not to put too fine a point on it, but that comes out to 10 days using your system.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #9
    Distinguished Community Member Howie's Avatar
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    9 days, and a wake up! It just turned tomorrow!
    Roswell was a gift.

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  19. #10
    Distinguished Community Member agate's Avatar
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    Wrong, at least from my standpoint. It's 11:25 PM here.

    I'm using those new emoticons more these days. These new computer glasses I have make it possible to see them better.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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