International Cholangiocarcinoma Patient Registry

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  • June 27, 2014 at 11:18 pm #83337
    lainy
    Spectator

    Marion and Rick…..everyone involved in the Registration….JOB WELL DONE I don’t think a beat was skipped and very easy to read and understand, BTW Thanks for keeping me busy with this Registration this afternoon. Lets hope we get more people than we ever dreamed of!

    June 27, 2014 at 10:28 pm #83336
    lainy
    Spectator

    Dear Andrea, thanks so much. In the meantime I got an email from our Rick and I can get in that way. Weird but will also take your advise and thanks. Hope you are doing well!!!!!!!!

    June 27, 2014 at 10:04 pm #83335
    ascott
    Spectator

    Lainy,

    Another thing you could try is clearing your browser cache. On my Mac that means Reset Safari/Clear History. Rick might have already suggested this and/or could tell you how to do it on a PC.

    More info from the Registry web page:

    Who can participate?

    Any person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)

    A family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)

    Andrea, Jason’s wife :)

    June 27, 2014 at 9:13 pm #83334
    marions
    Moderator

    Lainy….anyone with first hand knowledge of this disease should enter the data – not only patients
    Let us know whether you need additional help with navigating the registry.
    Hugs,
    Marion

    June 27, 2014 at 9:02 pm #83333
    donnamayer
    Member

    Become an active contributor in the mission to find a cure for Cholangiocarcinoma!

    For a small investment of time, you can provide a wealth of knowledge to researchers worldwide to help them better understand cholangiocarcinoma and identify patients to participate in clinical trials and research surveys. The more data the registry collects, the more efficiently researchers will be able to focus their endeavors.

    Please join the ICPR at http://registry.cholangiocarcinoma.org

    June 27, 2014 at 7:58 pm #83332
    gavin
    Moderator

    This page follows on from the above link as well.

    https://cholangiocarcinoma.patientcrossroads.org/index.php?option=com_content&view=article&id=259&Itemid=490&lang=en

    June 27, 2014 at 7:57 pm #83331
    gavin
    Moderator

    Can you get this link to work Lainy?

    https://cholangiocarcinoma.patientcrossroads.org/

    June 27, 2014 at 7:53 pm #83330
    lainy
    Spectator

    Marion, I just tried that, thanks, but get the same results. Oh well. As long as the members are getting it that is what is important. Thanks anyway.

    June 27, 2014 at 7:52 pm #83329
    gavin
    Moderator

    It seems to be working for me over here Lainy. Am sure that Rick will get it fixed though!

    June 27, 2014 at 7:48 pm #83328
    marions
    Moderator

    Lainy….every link works from our end; have you tried:
    registry.cholangiocarcinoma.org

    June 27, 2014 at 7:38 pm #83327
    marions
    Moderator

    Lainy, I will forward to Rick.

    June 27, 2014 at 7:35 pm #83326
    lainy
    Spectator

    Darla, I have rebooted several times and I just keep getting ……..THis Page Cannot Be Displayed…..forbidden 403

    June 27, 2014 at 7:00 pm #83325
    darla
    Spectator

    Lainy, Were you able to get it? I just tried it and it comes up for me.

    June 27, 2014 at 6:05 pm #83324
    lainy
    Spectator

    Gavin, have you tried to get in the site? Just a blank page comes up for me.

    June 27, 2014 at 6:01 pm #83323
    gavin
    Moderator

    Thanks for that Marion. Rick put it on the FB page as well so let’s hope we get there.

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