What is the CHSTRONG-KIDS Study?

CHSTRONG KIDS stands for “Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS.”

This is a joint project with Boston University School of Public Health, the CDC National Center on Birth Defects and Developmental Disabilities, and the Massachusetts Department of Public Health, Division of Surveillance, Research, and Promotion of Perinatal Health.

We’re conducting a survey on children and adolescents born between 2006 and 2021 with congenital heart defects (CHD) to understand their lived experience and that of their caregivers. The survey asks about children’s health, any barriers to health care, and transition of care from childhood to adulthood. We also ask about the needs and experiences of their caregivers.

What is the purpose of the study?

We seek to understand the needs of children and adolescents with CHD and their caregivers and to identify gaps in meeting these needs, with the overarching goal of enhancing any long-term effects of CHD. Our focus is on healthcare use, education, social life, and overall quality of life.

Why participate?

To pinpoint the unaddressed needs of children with CHD and their caregivers, we need to learn about the experiences of many, including persons like you. All responses are important to us, so we can work toward filling gaps at home, school, and in the community.

Who is eligible?

Parents or caregivers can participate if your child was born in Massachusetts between 2006 and 2021 with a CHD that was identified by the Massachusetts Birth Defects Monitoring Program within the Division for Surveillance, Research, and Promotion of Perinatal Health at the Massachusetts Department of Public Health.