Thank you for taking part in the Early Check study.

We are inviting all parents whose babies have been diagnosed with one of the conditions we test for in Early Check to join the Early Check long-term follow-up study. The study is divided into two research activities:

• A 6-month assessment visit with you and your baby which will include a developmental assessment of your baby as well as a brief assessment of your family's well-being.
• Enrollment in the Early Check Research Registry which allows our researchers to contact you a few times to ask about your baby’s health and development and about your well-being. We will also tell you about new research studies or treatments that may become available for your child’s condition.

The goals of the long-term follow-up study are to (1) do more follow-up assessments with your baby and ask some questions about how your family is adjusting to your baby’s genetic diagnosis, and (2) keep you updated on new treatments and research studies.

It’s up to you to give permission for your baby to take part in these activities. However, because you are under 18 years old, both you and one of your parents (or legal guardian) must choose to give permission for you to participate in these research activities. If your parent chooses not to give permission for you to take part in the research activities, your baby can still take part in the 6-month assessment and the registry with your permission.

If you choose to say yes now, you can always change your mind and stop taking part in either one later. No matter what you choose to do you can still receive care from your child’s regular healthcare provider.