We are asking you to take part in this research study because you have a child (under the age of 18 years old) or you are a person aged 18 years old.

Heart disease remains the leading cause of death and leads to a poor quality of life among older individuals. The risk factors that lead to heart disease start early in life. By as early as age 8 years old already 1 out of 5 (20%) of children no longer have ideal cardiovascular health (CVH). Importantly, this research will focus on how CVH changes throughout childhood and adolescence. The goal of this study is to examine CVH patterns from birth through age 20 among 7,000 children and their families.

We ask that you and your child participate in this research study once a year for a total of 2 years.
Over a 2 year period, you will be asked to complete one survey each year for a total of 3 surveys about the health and well-being of yourself, your child and your family. In addition, we request your permission to collect information about the health of your child from your child’s medical records for research purposes.
More detailed information about the study procedures can be found under the section What happens if I say “Yes, I want to be in this research”?

This study does not have any physical risks for you or your child. The primary risks of participation in this research are related to emotional discomfort you may have in answering questions about your child’s health and the risk for loss of confidentiality (your private information). Care will be taken to minimize these risks.

There are no benefits to you from your taking part in this research. However, possible benefits to others in the future include improvement in the understanding of CVH in children.

Participation in research is completely voluntary. You decide whether or not to participate. If you choose to not participate, there will be no penalty to you or loss of benefit to which you are entitled.
Your alternative to participating in this research study is to not participate.

If you have questions, concerns, or complaints, or think the research has hurt you, talk to the research team by contacting the Principal Investigator, Dr. Norrina Allen at (312) 503-3438 or norrina-allen@northwestern.edu.
This research has been reviewed and approved by an Institutional Review Board (IRB). You may talk to them at (312) 503-9338 or irb@northwestern.edu if:

1. Your questions, concerns, or complaints are not being answered by the research team.
2. You cannot reach the research team.
3. You want to talk to someone besides the research team.
4. You have questions about your rights as a research participant.
5. You want to get information or provide input about this research.

We expect about 7,000 people will participate in this research study.

You will be asked to complete three surveys over 2 years, each one about 1 year apart. In addition, for research purposes, we will collect information about you/your child’s health from your/your child’s medical records to better understand your/your child’s CVH.

"You can leave the research at any time; it will not be held against you. If you decide to leave the research, notify the investigator and the investigator will make sure that no further surveys will be done and no further information will be collected from your/your child’s medical record. Choosing not to be in this study or to stop being in this study will not result in any penalty to you or loss of benefit to which you are entitled. Specifically, your choice not to be in this study will not negatively affect your right to any present or future medical treatment."

Taking part in this research study will not lead to any costs to you.

Efforts will be made to limit the use and disclosure of your personal information, including study records and information collected from your/your child’s medical records, to people who have a need to review this information. We cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB, the NIH, and other representatives of this institution. If we learn about current or ongoing child abuse or neglect, we may be required or permitted by law or policy to report this information to authorities. All research data will be securely, electronically stored at Northwestern and will only be accessible by approved study staff.

If you agree to take part in this research study, we will pay you $20 per annual survey for your time and effort. You will be issued a virtual gift card (pre-loaded with a value of $20), which is a type of virtual debit card with a specific dollar value programmed into it. Once a study visit is completed, $20 will be loaded onto your virtual gift card within 5 to 7 business days. After 5 to 7 business days you will receive a link with your virtual gift card. Please check your junk or spam folder if you do not receive an email. If an email does not arrive with your virtual gift card please notify the study at YoungHearts@northwestern.edu and a new virtual gift card will be issued.