About CHSTRONG KIDS

Overview

CHSTRONG KIDS is a survey of families of children born with heart defects. We will gather information about healthcare use, education, social experiences, and quality of life from families of children with heart defects. This information will help us identify important issues for children and adolescents with heart defects and their parents or caregivers.

CHSTRONG KIDS is organized by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC), in collaboration with the following:

• Minnesota Department of Health
• Massachusetts Department of Public Health
• Boston University School of Public Health

Why participate?

People born with heart defects are living longer because of better care. However, little is known about the long-term health and well-being of children born with heart defects or the needs of their caregivers. To learn more, we are asking parents or caregivers of children born with heart defects to complete a brief survey.

If you received a survey, your experiences are important. The information you provide can help us understand what children with heart defects and their families need. This information may help families of children born with heart defects plan for the future. It may also inform and guide health systems to better support families like yours.

Eligibility

Parents or caregivers can participate if your child meets the following criteria:

• Your child was born between 2006 and 2021.
• Your child was born in Minnesota, Massachusetts, or metropolitan Atlanta, Georgia.
• Your child was diagnosed with a heart defect in the first few years of life.

CHSTRONG KIDS focuses on specific heart defects; only families whose child has one of these heart defects will be asked to complete the survey.

We identify potential participants by working with birth defect programs in Minnesota, Massachusetts, and metropolitan Atlanta. As part of public health efforts in their state, these teams collect information from hospitals about children born with heart defects.

What to Expect

This survey asks questions about your child's healthcare use, education, social experiences, and quality of life as well as your needs and experiences as their caregiver.

The survey should take about 20 minutes to complete. As a thank you, we are sending each family a $5 gift card to keep. You do not have to complete the survey to receive the $5 gift card. If you complete the survey, we will send you another $20 gift card. This means that you will receive a total of $25 in gift cards if you complete the survey.

If you received a survey, your participation in this survey is up to you. There are no consequences if you decide not to complete the survey. You can refuse to answer any questions and you can stop at any time.

Your privacy

In reports, all survey participants' answers will be combined with the answers from everyone else who took part in the survey. We will never share information that could identify any caregiver or their child.

Where to learn about findings

We will share what we learn at meetings and through reports. The survey information may help identify the unmet needs of children born with heart defects and their caregivers. Additionally, this information may help families of children born with heart defects plan for the future.

Contacts

Get in touch with CHSTRONG KIDS staff members by sending an email to one of the addresses below.

If you received a survey and your child was born in:

Minnesota: Email health.CYSHN@state.mn.us

Massachusetts: Email chkids@bu.edu

Georgia: Email chstrong@cdc.gov

If you're not sure who to contact or if you have questions about the project overall, contact chstrong@cdc.gov.