Questions and Answers About the Study
This study will explore the experiences of teens living with IBD. Questions will focus on social life, family, school, symptoms, and the challenges of living with IBD.
WHO CAN PARTICIPATE IN THIS STUDY?
Your teen is able to join this study if ALL of the following is true and your teen:
is between 13 and 17 years of age
was diagnosed with ulcerative colitis OR Crohn’s disease
can read and write English
live in the United States and receive care at an ImproveCareNow center
saw their IBD doctor in the past 6 months
can independently complete an online survey
has access to the Internet from a smart phone, tablet or computer
HOW DOES MY TEEN TAKE PART?
If you give permission for your teen to take part in this study, the researcher will email your teen an online screening survey. Based on their answers to the screening survey, if your teen is able to take part they will be informed that they can join the study and be provided with an information sheet about the study. If your teen chooses to join the study, they will be directed to complete the online study survey.
Your teen will receive an online $15 Amazon e-gift card after completing each survey (for total of $30) in appreciation for their time. If interested and eligible, your teen may also be invited to use a mobile application (app) for the duration of one (1) week. This app was developed by a research team especially for teens with IBD.
AS A PARENT/GUARDIAN, WHAT WILL I BE ASKED TO DO?
To protect minors, no research can be conducted without parental consent. You can give permission for your teen to take part by going to the "Join the Study" tab on this site. The link will take you to a survey with study information where you will be asked for your consent. If you give permission for your teen to take part in this study, the researcher will email your teen an online screening survey. IF YOU AGREE, you will be asked to give the researcher permission to:
Contact your teen to explore their interest in joining the study; and
Access IBD-specific medical information from the ImproveCareNow (ICN) database ONLY IF YOUR TEEN AGREES TO JOIN THE STUDY.
WHAT DOES BEING A PART OF THIS STUDY MEAN FOR MY TEEN?
Your teen will be asked to complete two (2) online surveys – one immediately after joining the study and a second survey 6 months later.
In addition, they may be invited to use a mobile app, the SMART-IBD app, to log their IBD medications and symptoms for one (1) week after joining the study. Choosing to use this mobile app is an optional part of the study; you can decline this part of the study and your teen can still participate in this study.
You can expect that it will take your teen about 15-20 minutes to complete the online survey and about 4 minutes or less to use the app every day.
Finally, your teen will be asked to give the researcher permission to access his/her medical information from the ImproveCareNow (ICN) database.
WHAT IS THE IMPROVECARENOW (ICN) DATABASE?
The ICN database is a data repository that contains health information that is routinely collected at time of IBD diagnosis and at later outpatient visits for patients seen at ICN care centers. At each ICN care center, parents must provide permission for their child's routinely collected data to be included in the database and for this information to be available for research purposes.
WHAT KIND OF INFORMATION WILL BE USED FROM THE ICN DATABASE FOR THIS STUDY?
IF you have already consented to allow your child’s health information to be included in the ICN database and used for research studies such as this one, a small amount of health information will be pulled from the ICN database. The information that will be included in this study will be IBD-specific health information such as IBD diagnosis, any IBD treatment and medications, and disease activity.
WILL THIS AFFECT MY TEEN'S MEDICAL CARE?
NO. Your teen may decide to take part or not to take part in the study. Either way, it will not affect his/her medical care.
WHO WILL SEE MY TEEN'S ANSWERS?
Your teen’s answers will not be shared with anyone outside this study.
WILL MY TEEN HAVE TO GO ANYWHERE?
NO. Everything is done by phone and computer.
WHAT IF MY TEEN DOES NOT WANT TO FINISH THE STUDY?
Your teen is free to stop at any time. They will be paid for each survey they complete.