Thank you for joining us. We are so glad you are here!

Dear Heart Community,

A little more than a year ago, Ethan Lindberg Foundation, along with a group of amazing advocates and funders, started a project to collect and assemble quality of life data examining patient-reported outcomes. Our hope is to contribute to congenital heart disease (CHD) research by quantifying and measuring what we all know to be true—CHD is a lifelong disease that not only medically impacts patients, their families and caregivers, but also impacts them mentally, emotionally, socially and financially. Sadly, these topics are woefully under-researched.

The Financial Impact of Congenital Heart Disease Family Survey is the first of what we hope will be several surveys on various quality of life topics. By taking this survey you will help our community better understand the way that families are financially impacted by CHD. This survey was developed in partnership with graduate students from the University of Baltimore and Breakthrough Strategy to assess the impact of financial stressors on families of children with CHD. We seek to discover available resources to help cope with those stressors and the possible implications on family and work life.

Before starting the survey, please know:

  • Your responses are completely anonymous. No individual answers will be linked to personal identifying information. We are not collecting any data that can be personally attributed to you or your family.

  • This survey is for parents and caregivers only. The project scope is currently focused on validating measures that can be used in future research. We hope to include other voices in subsequent studies. Parents and caregivers of living and deceased children are invited to participate.

  • The survey is expected to take about 30 minutes. Although, you can choose to stop taking the survey at any time.

  • Only one person per household should complete the survey.

  • This survey will be active for only two weeks. Please add your voice by taking the survey today.

  • Please share this page with anyone you think would like to contribute to this research. Help us reach our goal of 300 survey responses.

Thank you for taking time out of your very busy lives to share your perspective with us.


Jessica Lindberg, Scott Leezer and Ethan Lindberg Foundation

A special thank you to the following organizations who have joined us in funding this project.


And thank you to these partners for donating their time and expertise to make this survey possible.

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