Participant Introductory Letter (English)

July 25, 2022

«firstname» «lastname»

«address1»

«address2»

«city», «state» «zip»

Dear «firstname»,

We invite you to take part in the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS (CHSTRONG-KIDS), a survey to examine the unmet needs of children born with heart conditions and their parents or caregivers. This project is being conducted by the Metropolitan Atlanta Congenital Defects Program and Centers for Disease Control and Prevention (CDC).

Your child «childsfirstname» was identified by the state where they were born as a person born with a heart condition. We would like you to complete a 20-minute survey about your child and their health, quality of life, and access to care. Your information will help us identify unmet needs of children born with a heart condition. To learn more about this project, you can visit <website address>.

None of your answers will be linked to your name or your child’s name. Your child’s name will never be released as having a heart condition. Your name will never be released as having completed the survey or having been asked to participate. We know your time is valuable. As a thank you, we have included a $5 gift card for you to keep whether or not you complete the survey. If you complete the survey, we will send you another $20 gift card.

Across the country, thousands of parents and caregivers of children born with heart conditions are taking part in this survey. Everyone’s answers are important to us and will add to what we learn about how heart conditions affect children. The findings from the survey may help identify unmet needs of children born with heart conditions and their caregivers. Additionally, this information may help families of children with heart conditions plan for the future.

If you have questions about CHSTRONG-KIDS or if we have contacted you in error and your child was not born with a heart condition, please contact the CHSTRONG-KIDS Project Manager at [email protected] or (855) 484-0105 so that we can update our records.

Thank you for completing this important survey.

S incerely,

Sherry L. Farr, Ph.D.

National Center on Birth Defects and Developmental Disabilities

Affix gift card here.

Centers for Disease Control and Prevention

Enclosures:

Survey

Gift card

Participant Information Sheet (this explains your rights as a survey participant)

Si desea llenar la encuesta en Español, favor de enviar un correo electrónico

a [email protected] o llamar al (855) 484-0105.