Participate in Research about COVID-19

Help improve the understanding of how COVID-19 impacts CHD

Patients and families want to know how COVID-19 could affect their child or themselves. Right now, we don’t know. But you can help.

This study is unique because it collects information directly from people with CHD, of all ages and all types of CHD. Other research that looks at hospital records only identifies those who have become so ill they seek medical treatment as a result of COVID-19. With your help, we can reach adults and children with CHD from across the country with mild, moderate and severe responses to COVID-19, to provide a more complete picture of the impact of COVID-19 on people with CHD.

If you or your child have CHD and have symptoms or tested positive for COVID-19, we are asking you to complete a short survey. If you or your child have not tested positive for COVID-19, you may still complete the survey.

  • The survey takes roughly 5-7 minutes.
  • The person completing the survey must be 18 years of age. Parents or legal guardian can complete the survey on behalf of children under the age of 18.
  • The survey does ask for personal health information. We have partnered with data collection and storage leaders ArborMetrix to ensure the safety and security of you or your child’s personal information.
  • We have partnered with Boston Children’s Hospital to assure the excellence of our survey methodology.
  • The survey is voluntary, you do not have to participate and can opt out at any time.
  • While there is no direct benefit to you for completing the survey at this time, you will be helping us learn more about COVID-19 and CHD so we can provide critical education to medical experts and the congenital heart community.
  • The information collected by this survey will be part of a larger longitudinal (long-term) database helping to inform future research. For this reason, we are collecting identifying information including the participant’s name, email address, and phone number in order to send you additional follow-up surveys.

The information from this survey will not answer everyone’s questions about CHD and COVID-19. But it will help us begin to gather, analyze and disseminate information specific to the congenital heart community, both now and in the future.

This project is supported in part by:

ArborMetrix advances healthcare through data science. They deliver analytics technology and services that enable data-driven healthcare improvement. Their proven solutions allow for efficient aggregation and deep analysis of healthcare data, and deliver evidence-based insights that improve outcomes, advance research, and demonstrate safety, effectiveness, and value. Learn more at

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