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

lobbyist0724's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

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/

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

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

a_oaklee
Posts: 414
Joined: Nov 2013

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

lobbyist0724's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

Thanks for supporting!!!

 

I thought I forgot to post in this board.

APny's picture
APny
Posts: 1904
Joined: Mar 2014

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

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

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's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

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

APny's picture
APny
Posts: 1904
Joined: Mar 2014

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

lobbyist0724's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

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's picture
APny
Posts: 1904
Joined: Mar 2014

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's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

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

lobbyist0724's picture
lobbyist0724
Posts: 377
Joined: Sep 2016

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.

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