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Author Topic: Join a small research study about CKD patients online  (Read 4731 times)
k8lin
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« on: July 10, 2013, 07:20:06 AM »

I have received permission from the IHD admins to post this message.

My name is Kaitlin. I am a doctoral student studying how people look for information online and what they share about their health in online support groups. I have had chronic kidney disease (CKD) for 15 years, and I believe that this research will help other patients like us find and use health information.
I would like to ask you to join my research study. If you choose to join, I will interview you over the phone twice to ask you about how you use the Internet to look for and share information about kidney disease. Each phone call will take between 60 and 90 minutes. To thank you for your time, you will receive a $25 gift card after the second interview is finished. About 20 to 25 people will be in this study.

I have received permission from the site to post this message. I also have consent from the site to collect some of the posts on this forum for my research, starting with the site creation date and ending no later than June 2015. If you would prefer that I do not collect and analyze your posts, even if you are not speaking with me on the phone, please contact me at kaitcost@email.unc.edu.

If you do not take part in the study, your posts may be collected and analyzed if they appear in threads where participants have posted. However, nothing you have posted on this site will be quoted in any research products, and you will not be individually identifiable in any way.
To take part in this study or to request that your posts not be used please contact me by e-mail at kaitcost@email.unc.edu.

You must speak English and be a CKD patient to join the study. Also, you need to have been using this forum for at least one month.

In addition, you should be undergoing a transition in your health, like making the decision about what kind of dialysis you will choose, or being recently diagnosed with chronic kidney disease. If you feel that you are in a transition with your health, you are eligible to participate.
Because this research is not affiliated with a healthcare provider or hospital, there is no risk that you will lose access to care by joining this study.

The UNC Chapel Hill Institutional Review Board approved this study. If you have questions or concerns please contact them at 919-966-3113 or by e-mail at irb_questions@unc.edu. You can also e-mail my advisor, Dr. Barbara Wildemuth, at wildemuth@unc.edu.
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SooMK
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« Reply #1 on: September 02, 2013, 05:40:26 PM »

Just wanted IHDers to consider helping Kaitlin out with her study. I have had one interview with another scheduled and it's pretty painless. Mostly just answering her questions about CKD and online forums.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
MaryD
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« Reply #2 on: September 02, 2013, 08:03:21 PM »

I did think of helping out but decided that she would probably not want to phone Australia to interview me.
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galvo
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« Reply #3 on: September 02, 2013, 09:56:47 PM »

Just beat me to it, Mary!
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Galvo
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« Reply #4 on: September 02, 2013, 10:31:22 PM »

I emailed you my contact information.
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MooseMom
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« Reply #5 on: September 03, 2013, 01:10:32 PM »

Just wanted IHDers to consider helping Kaitlin out with her study. I have had one interview with another scheduled and it's pretty painless. Mostly just answering her questions about CKD and online forums.

Same here.  Please consider participating in the study.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Rerun
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« Reply #6 on: September 04, 2013, 11:23:03 AM »

Go introduce yourself.

http://ihatedialysis.com/forum/index.php?board=14.0

Rerun, Moderator    :welcomesign;   :police:
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k8lin
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« Reply #7 on: September 04, 2013, 08:24:30 PM »

As long as you fit the criteria listed in my original post, I am more than happy to call any person who would like to talk to me no matter their country of origin! :) Please do get in touch if you're interested in participating, and I will call you at your convenience.

I am now offering $75 as a token of appreciation for each participant to thank them for their time, rather than $25.

Also, thanks, Rerun! I have properly introduced myself now. :)
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okarol
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« Reply #8 on: September 05, 2013, 12:11:27 AM »

Thanks k8lin - I hope you get more members to participate!  :waving;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cdwbrooklyn
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« Reply #9 on: September 05, 2013, 09:49:40 AM »

Has anyone received the call and interviewed with K8lin?  If so, can you please share your experience? 

Thanks.
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
MooseMom
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« Reply #10 on: September 05, 2013, 12:08:22 PM »

Cdwbrooklyn, I have had my first phone interview with K8lin and will have the second next week.  It lasted 90 minutes, mostly because I talk too much, but count on each interview lasting between 60-90 minutes.  Remember, she has CKD herself and has had 2 transplants, so it's not like she's completely clueless!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SooMK
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« Reply #11 on: September 07, 2013, 04:07:28 PM »

I've had two interviews with K8lin now. There's some thought provoking questions but mostly it's easy. She listened to me rant and was very patient as I climbed my soapbox which is what you get from me.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
cdwbrooklyn
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Positive Thoughts equal Positive Energy

« Reply #12 on: September 09, 2013, 09:36:07 AM »

Okay, I will participate in this study.  I've emailed my information.
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
YLGuy
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« Reply #13 on: September 19, 2013, 10:49:02 PM »

 :bump;
I had my first interview.  I enjoyed speaking with her.  She asked what I thought were some informed questions.  If you know anyone else who may want to participate please pass this info along.
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okarol
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« Reply #14 on: September 26, 2013, 11:08:30 PM »

 :2thumbsup; Thank you for helping with her study.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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