You will be reimbursed for your time and effort: $50 after the 18-month-old and $100 after the 36-month-old study visits.

If you live far away from the hospital, the study will also reimburse you for travel expenses up to a certain amount. You can talk to the study doctor or coordinator for the specific amounts and details about expense reimbursement.

The blood samples from the newborn and 36-month-old study procedures are used for two purposes:

1. The study will test for any genetic syndromes that can be related to both congenital heart disease and neurodevelopment. You can choose if you want to be notified of these results, or not.
2. The study will also test for bio-markers of brain health, which may help explain why some children with this diagnosis have developmental delays, and others do not.

You will not have to pay for any of the developmental tests, genome tests, blood draws, or online surveys for the study.

You will not have to pay to receive the results from your child’s developmental or genetic testing.

If you choose to learn more about your child’s genetic test results from a genetic counselor, or to request a clinical neurodevelopment office visit, you will be responsible for paying for those consultations.

Telehealth visits to discuss your child’s developmental screening results are offered as part of the study and recommended. However, they are not required to take part in the study. 

1. Screening: The local study team will review your child’s medical record to determine if your child qualifies to participate in CAN-DO.
2. After enrolling: There are two or three milestones in the study, depending on how old your child is when enrolling:

• Newborn: Some children will join the study as newborns, before their shunt or stent procedure. Three blood samples (1-2 ml each) will be taken; one before the procedures, one at 2-hours after, and one at 24-hours after.
• 18-months-old: A parent/caregiver will be asked to complete 2 online surveys about their child’s development. The results will be provided back to the family.
• 36-months-old: Children will come to the hospital for developmental testing that will take about 1 hour. A parent/ caregiver will fill out 4 online surveys. Testing and survey results will be given to the family. A 1-2 ml blood sample will be taken when the child is already having a clinical blood draw (if possible).