FAQs

1. How did you get my contact information?

We were able to find your contact information because your child was identified by the Massachusetts Department of Public Health Birth Defects Registry as a person born with a heart condition.

2. What if I don’t want to participate?

If you choose to not participate in this study, you are free to do so. There will be no consequences or charges for choosing not to participate.

3. What should I expect on the survey?

This survey asks about your child, their quality of life and access to healthcare, and your experiences as their caregiver. The survey will take about 20 minutes. It can be completed online, by mail, or over the telephone. None of your answers will be linked to your name or your child’s name.

A $5 gift card is included with the survey for you to keep whether or not you complete the survey. If you choose to complete the survey, we will send you another gift card worth $20 to thank you for your time. 

4. Will my responses/personal information be confidential? 

Yes, we will not release any information that could identify you or your child. Your name and your child’s name will never be shared as having a heart condition, having completed the survey, or having been asked to participate.

5. Can I receive an e-gift card instead of a physical gift card?

Yes! You can request one by contacting chkids@bu.edu or 617-358-4599.

6. How do I get the survey in Spanish?/¿Cómo obtengo la encuesta en español?

If you would like to receive a survey in Spanish, please contact us at chkids@bu.edu or 617-358-4599.
Si desea recibir una encuesta en español, comuníquese con nosotros al chkids@bu.edu o 617-358-4599.

7. Can I take the survey online?

Yes! Just scan your unique QR code located on the materials inside your survey packet.

8. Who can I contact to ask questions?

If you have any questions, you can contact the project coordinator, Alexis Miket, via email at chkids@bu.edu.