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Thread: VPPRN enrolling patients outside the US now

  1. #1
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    Thumbs up VPPRN enrolling patients outside the US now

    The Vasculitis Clinical Research Consortium and the Vasculitis Foundation are excited to introduce the Vasculitis Patient-Powered Research Network (V-PPRN)!

    The V-PPRN launched in November 2014 to patients in the United States. The V-PPRN is now expanding internationally and is enrolling patients outside of the United States.

    The V-PPRN is a research network with the ability to collect and securely store patients' disease experiences, known as patient-reported data to build robust data for vasculitis research.

    We are enrolling patients with vasculitis, parents of a child with vasculitis, and caregivers of adult patients with vasculitis. The V-PPRN is studying the following forms of vasculitis:
    The V-PPRN is a whole new way of finding answers for the questions most important to YOU and other patients living with vasculitis.

    We hope you will join us in creating a new vision for vasculitis research by becoming a vasculitis visionary and powering the V-PPRN!

    Here is how to join:

    1. Follow this link: www.vpprn.org/webapp/views/consent
    2. After you register, answer questions about yourself to complete your MyV-PPRN patient profile.
    3. Check in regularly and make sure your information is up-to-date.



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    I have been trying to register but am encountering problems with the system saying my date of birth is invalid! I know I am old, but not that old!!!
    Diagnosed July 2009

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    Quote Originally Posted by pwc51 View Post
    I have been trying to register but am encountering problems with the system saying my date of birth is invalid! I know I am old, but not that old!!!
    It worked for me, are you older than 1958?

    Perhaps you didn't get it entered in the exact format it wants.

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    Sadly I am older than 1958! - the system automatically puts the date format when using the calendar. If I type the date incorrectly it will not let me pass the field yet, as soon as I hit Register, it says the date format is wrong! I am wondering if there is an internationalisation problem as the UK format is not the same as the US? I have emailed the team but not had a response as yet.
    Diagnosed July 2009

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    Ahhh, that's the difference. I didn't use the calendar thingy, just typed it in.

    01/22/1902, in your case

    Not certain yet what they're actually up to with this but it seems it's simple data collection concerning patient perspective, how do you feel sorta stuff. General data that researchers can manipulate to compare patient response to treatments. Right away I got an email invite to fill out a follow up, presumably to compare with the original and verify my answers.

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    I have registered using a birth date that had a day and year that are interchangeable! Started filling in the forms and then they started giving errors (probably because it kept putting UK phone numbers into the US fields, without me entering them!) - all seems a bit flakey at present! I may get there in the end!
    Diagnosed July 2009

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    Quote Originally Posted by pwc51 View Post
    I have registered using a birth date that had a day and year that are interchangeable! Started filling in the forms and then they started giving errors (probably because it kept putting UK phone numbers into the US fields, without me entering them!) - all seems a bit flakey at present! I may get there in the end!
    So US is generally MDY formatting, I believe European formatting tends toward DMY? ISO is YMD which is what they should use for anything online, but frequently people default to one of the other formats. Not sure if that helps at all LOL
    ~ Bob

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    Completely agree Bob - I'll wait to see if they manage to fix the problem!
    Diagnosed July 2009

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    Thanks for posting. I guess I'll join. In general I usually don't want my data to be put in any databases, but this might be an exception since its very likely used for my benefit instead of some marketers benefit.

    Quote Originally Posted by Psyborg View Post
    So US is generally MDY formatting, I believe European formatting tends toward DMY? ISO is YMD which is what they should use for anything online, but frequently people default to one of the other formats. Not sure if that helps at all LOL
    Oh, I heard they use it in Japan. I like it the best, easy to sort stuff on the computer when you use YMD in the naming.

    A helpful pic to highlight the different methods

    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    The link does not open for me, either does the web page, which for my computer means that it is not a secure locked site. or it's no longer a valid site.
    I wont be putting my information on there, if I was able to open it.
    Sounds good, but sorry, I'm out
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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