Join a small research study about CKD patients online

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 17 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. With your consent, the interviews will be recorded. Each phone call will take between 60 and 90 minutes. To thank you for your time, you will receive a $75 gift card after the second interview is finished. About 20 to 25 people will be in this study.

I will also collect some of the posts on this forum for my research, starting with this site’s 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. I am particularly interested in speaking with people who are being treated for CKD with in-center or peritoneal dialysis, individuals who do not post to the forums but visit and read the information posted here, people with multiple nephrologists, and people who visit multiple online support groups for CKD (including Facebook). However, any English-speaking individuals who have been diagnosed with CKD are eligible.

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.

(I received permission to post this message from a moderator in June 2013.)