First-ever GLOBAL kidney cancer patient & caregiver survey from IKCC

lobbyist0724
lobbyist0724 Member Posts: 494 Member

I thought I posted it, but guess not... Please support the effort from IKCC. Thank you.

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The IKCC (International Kidney Cancer Coalition) has just launched the first-ever GLOBAL kidney cancer patient & caregiver survey. This is a massive project that is supported by 26 patient organisations worldwide. The survey has been translated into 11 languages and is available to patients anywhere in the world. We are hoping for respond from a good number of countries so that we can provide a detailed report, and compare that country to the global trends. All reports will be publicly available and for use by that country's patient organisation.

You can take the survey in any one of 11 languages. 

Please take the survey here:

https://ikcc.org/global-patient-survey/

Comments

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    Is this the same one..........

    I did last week that was taken off the board? Thanks

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hd67xlch said:

    Is this the same one..........

    I did last week that was taken off the board? Thanks

    Curious why it would be taken

    Curious why it would be taken off the board.  Do you know why?

  • lobbyist0724
    lobbyist0724 Member Posts: 494 Member
    Hd67xlch said:

    Is this the same one..........

    I did last week that was taken off the board? Thanks

    Thanks for supporting!!!

    Thanks for supporting!!!

     

    I thought I forgot to post in this board.

  • APny
    APny Member Posts: 1,995 Member
    Well, I took it. Hope it

    Well, I took it. Hope it helps others. Thanks for posting link.

  • todd121
    todd121 Member Posts: 1,448
    edited September 2018 #6
    Problems with Survey

    I had a few problems with the survey. Didn't see how to provide feedback. Picking the country you live with: that selection pulldown has a problem. I sure hope they get accurate results. There were problems picking "United States" "United Kingdom" and "Turkey". The program seemed to mix them up. I'm not sure I picked the right country. If I picked "United States", the display popped up "United Kingdom". If I picked "Turkey" the next page asked which part of the United Kingdom I lived in. I finally picked United States and moved on ignoring what was displayed.

    Did anybody else have similar problems?

    Todd

  • lobbyist0724
    lobbyist0724 Member Posts: 494 Member
    todd121 said:

    Problems with Survey

    I had a few problems with the survey. Didn't see how to provide feedback. Picking the country you live with: that selection pulldown has a problem. I sure hope they get accurate results. There were problems picking "United States" "United Kingdom" and "Turkey". The program seemed to mix them up. I'm not sure I picked the right country. If I picked "United States", the display popped up "United Kingdom". If I picked "Turkey" the next page asked which part of the United Kingdom I lived in. I finally picked United States and moved on ignoring what was displayed.

    Did anybody else have similar problems?

    Todd

    Thank you Todd for pointing

    Thank you Todd for pointing that out, I will bounce it back to them

  • APny
    APny Member Posts: 1,995 Member
    I had the same problem as

    I had the same problem as Todd. Hopefully the second time I picked US it stuck. 

  • lobbyist0724
    lobbyist0724 Member Posts: 494 Member
    Thank you Todd an Apny! Very

    Thank you Todd an Apny! Very much appreciated.

    Can you tell me what DEVICE are you using? (iPad, Samsung mobile? iPhone?)

    I was told that they have encountered this problem a couple of times so far, but it seems to be only on a few mobile devices.

    When we reported it, we were told that you can type 'United States' and that will work (or the real technical solution was to get them to clear their cache, their browser history etc. but that seemed too complicated.)

    We really appreciate getting the feedback. If anyone else has had this issue, please let me know!

  • APny
    APny Member Posts: 1,995 Member
    I used my laptop. Chrome

    I used my laptop. Chrome browser. I did type in United States the second time so hopefully that worked. And btw, the whole "clear your cookies, cache, browsing history" etc. is the suggested blanket "cure all" answer to just about every tech issue. It's kind of a joke with us in IT lol. 

  • lobbyist0724
    lobbyist0724 Member Posts: 494 Member
    APny said:

    I used my laptop. Chrome

    I used my laptop. Chrome browser. I did type in United States the second time so hopefully that worked. And btw, the whole "clear your cookies, cache, browsing history" etc. is the suggested blanket "cure all" answer to just about every tech issue. It's kind of a joke with us in IT lol. 

    So true, I heard about the

    So true, I heard about the clear cache technique once in awhile, but most of the time it doesn't help :)

  • lobbyist0724
    lobbyist0724 Member Posts: 494 Member
    edited September 2018 #12
    Big Thank You for participating!

    Hi everyone,

    Just posting an update that we are now way up over 1,000 responses to the Global Kidney Cancer Patient Survey.

     

    So if you haven't already donated 10 minutes to the project, please do! The issue with the country-selection is now

    fixed (code bug!) and so we just need 39 MORE lovely people from Canada to complete the survey in English or in French.

     

    You don't have to be "patient" -- it's for patients, long-time survivors, caregivers, family members, and also those diagnosed with any type of renal cyst or benign tumour. Link is here:

    https://ikcc.org/global-patient-survey/

     

    PS. As of yesterday, only 61 of that 1097 figure were from Canada -- and we would really like to get the number to 100 so that we can analyze the data for Canada as a whole and compare to Global trends/issues. It's hard to draw too many conclusions if the sample size is too low.