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Frequently Asked Questions for IBD Partners Kids & Teens

What do I have to do to participate?
Participation is simple. You and your child will complete a brief online survey about your child's condition and treatment, diet, physical activity, disease activity, quality of life and health status. Every six months we will ask you and your child to update the information in another internet survey.

My child will be 18 soon. What happens next?
When Kids & Teens participants turn 18, they are no longer eligible for the study. They are, however, still able to participate in IBD Partners and will be invited to do so. If you have IBD and are currently over age 18, please register with IBD Partners here.

Do parents and kids have to sign up together?
Parents and children do not have to physically be together to enroll and complete the questionnaire. Both the parent and the child have to agree to the study, but they may do so separately and at different times. We do recommend that parents and children sit together to complete the questionnaires in case questions arise, however it is not necessary.

What is the RISK Study? Can I sign up for that too?
RISK is a Crohn's & Colitis Foundation funded research study that collects data and biosamples from pediatric IBD patients. The Risk study is currently closed to new enrollment. If you are already participating in RISK, we will ask if it's ok for us to link the data and samples you gave with information you give to us. You do not have to say yes; it is voluntary to link the information. For detailed instructions about how you can link your RISK account to IBD Partners Kids & Teens, click here. If you are unsure of whether or not you are participating in the Risk study, please check with your doctor or the research coordinator at your hospital.

Can both parents complete surveys?
Absolutely. However, only one completed survey can be submitted. Parents may complete the survey together, or parents can login at different times to work on the survey. We recommend you decide as a family what the password will be so everyone can log in and help out. The child (if applicable) will use the same login and password as the parent.

Can I complete the survey for my child?
If your child is of age to complete a survey, you may complete it on your child's behalf if your child has a medical disability preventing him or her from completing it alone. You may always help your child, and we do recommend that the surveys be completed together as a family.

I'm getting reminders to complete my registration, but I know I already consented. What's going on?
There are several steps to completing registration. Although you may have provided consent, maybe the child or the parent hasn't completed the consent process. Log in to see the progress of the registration.

How much does it cost?
Participation is free. There is no cost to you. This is not a fundraising effort although we hope that you will continue to support the Crohn's & Colitis Foundation and the important work of the Foundation.

Can I opt out?
Participation is voluntary, but we hope as many people as possible will participate. The more participants, the more we will learn about IBD and the more we will be able to help people with IBD to live healthy and happy lives. Once you join the partnership, you can opt out at any time. Please click here to let us know.

I have friends or relatives with IBD. Can they join?
Participation is open to anyone with IBD. Interested IBD patients can go to our website --- cgibd.med.unc.edu/ccfapeds/ --- and join.

Do I have to answer all the questions?
The questions are generally straightforward and about your child's health and daily activities, but if any question makes you or your child uncomfortable or if you don't want to answer a question, you can skip it.

How long does the survey take?
The initial survey should take about 20 minutes. Once you start a survey it will remain open for 24 hours, so you can come back later to complete it.

Is the information safe?
Although we collect your child's name and your email addresses, we will not share any information without your permission. You will only be able to access your information through a personalized login page. Reports about the survey will not identify any individual --- we will just provide summary data. The computer server that stores the data is housed in a very secure location at the University of North Carolina.

How will my information be used?
The information you give us through the surveys will be studied by Crohn's & Colitis Foundation researchers. Researchers will study quality of life, complications and how patients with IBD feel when living with the disease. The researchers hope to improve outcomes and prevent complications. The information that you contribute ultimately will help in reaching the goal of more rapid research progress, better treatments and, ultimately, the cures we need.

What are the risks?
The only possible risk in participating in IBD Partners Kids & Teens is loss of privacy. However, the information you give to IBD Partners Kids & Teens is stored in a safe and secure location at the University of North Carolina. There are safeguards and passwords in place to prevent loss of privacy.

What do I get for participating?
You do not receive compensation for participating in IBD Partners Kids & Teens. You will receive health tips and important information about your IBD and your health, which can be shared with your doctor.

What if I have questions about Crohn's & Colitis Foundation?
If you have questions about IBD you can contact the Crohn's & Colitis Foundation by phone at 888-694-8872 or by email at ibdhelp@crohnscolitisfoundation.org.

What if I have questions about IBD Partners Kids & Teens?
Michael Kappelman, MD at the University of North Carolina at Chapel Hill is conducting this study. If you have questions or comments about the survey, please fill out an online form here to reach a coordinator at UNC who will be able to help you. You may also call Amber Robb, project manager at 919-445-0322.

I'd like to help. What do I do?
We really need your help to build a patient registry for Crohn's and colitis patients. We couldn't do it without the support and consideration of people like you. Please follow this link to REGISTER.

What should I do if I have a technical problem?
If you have technical problems, please click HERE.



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