ࡱ> AC@ ZbjbjWW 405566666JJJ84Jf(("""' 3$T)6;;;)66"">sss;p6"6"s;sss"@7>ˢG.sT0sss6h;;s;;;;;))s;;;;;;;;;;;;;;;; : University of North Carolina at Chapel Hill Assent to Participate in a Research Study Minor Subjects (7-14 yrs) ________________________________________________________________________ IRB Study #14-0539 IRB Version Date: March 7, 2014 Title of Study: CKD Parent-Youth Project Persons in charge of study: Ali Annaim, BS Where they work at -Chapel Hill. -Chapel Hill Phone number: 919-966-2561 Email Address: ali_annaim@med.unc.edu Other people who work on the study: Sarah Cohen, Kristi Bickford Source of funding for the study: Renal Research Institute Study Contact: Kristi Bickford Study Contact telephone number: 919-966-2561 Study Contact email: HYPERLINK "mailto:kristi_bickford@med.unc.edu" kristi_bickford@med.unc.edu _________________________________________________________________ These are some things we want you to know about research studies: Your parent needs to give permission for you to be in this study. You do not have to be in this study if you dont want to, even if your parent has already given permission. You may stop being in the study at any time. If you decide to stop, no one will be angry or upset with you. Sometimes good things happen to people who take part in studies, and sometimes things happen that they may not like. We will tell you more about these things below. Why are they doing this research study? The reason for doing this research is to learn more about how young people who have health conditions grow up to become healthy adults. We want to find out what young people do and do not know about their health. We also want to find out how having a health condition has affected other parts of your life like your friends, family, and overall happiness. This will help doctors know how to better teach other kids about their health and taking care of themselves. Why are you being asked to be in this research study? You are being asked to be in this study because you are a young person who has a health condition and will grow up to be an adult with a health condition one day. How many people will take part in this study? If you decide to be in this study, you will be one of about200 people in this research study. 100 parents and 100 children will be included in this study. What will happen during this study? During this study, you may be asked to answer questionsasked by a researcher and/orfill out surveys on your own. These questions and surveys willhelp us learn how much you know and don't know about your health, medicines, and taking care of yourself. They will also tell us other information that is important in learning how to best help you. You may be asked to complete one or moresurveysduring your doctor appointments, but you have the option of choosing not to answer any questions that you do not want to.We may askif it is ok to record your answers to some questions with a digital recorder. Youcan choose whether or notit is ok to be recorded by checkingone of the lines below that best matches your choice: _____ OK to record me during the study _____ Not OK to record me during the study This study will take place atthe Children'sHospital or the Ambulatory Care Clinic (ACC)and will last one hour. Who will be told the things we learn about you in this study? The only people who will be told the things we learn about you in this study are your parents, and the people listed on the first page of this form. What are the good things that might happen? People may have good things happen to them because they are in research studies. These are called benefits. There is little chance you will benefit from being in this research study. What are the bad things that might happen? Sometimes things happen to people in research studies that may make them feel bad. These are called risks. We do not think any bad things will happen to you if you take part in this study. Youshould report any problems to the researcher Will you get any money or gifts for being in this research study? You will not get any money or gifts for being in this research study. Who should you ask if you have any questions? If you have questions you should ask the people listed on the first page of this form. If you have other questions, complaints or concerns about your rights while you are in this research study you may contact the Institutional Review Board at 919-966-3113 or by email to  HYPERLINK "mailto:IRB_subjects@unc.edu" IRB_subjects@unc.edu. 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