Thank you for taking part in the Early Check study.
A few weeks ago, your baby had Early Check screening to test for a small number of rare health conditions. The screening found a result that is not normal for fragile X. This means that your baby could have the premutation or the full mutation for fragile X.
We are inviting all parents whose babies had a not-normal screening result to take part in the Early Check short-term follow-up study. The study is divided into three sets of research activities:
You and your baby may take part in the assessments only if your baby has the confirmatory testing. You may take part in the FX testing only if your baby has the confirmatory testing. If Early Check did not do this testing, you must provide a copy of your baby’s genetic report.
The goals of the short-term follow-up study are to (1) do a second test for your baby to check the screening result; (2) do a test to see if you have a fragile X gene change; (3) provide you with support in understanding the results; and (4) do some short assessments with your baby and ask you some questions to see how you and your baby are doing.
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 have FX testing or answer questions about yourself. 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 activities with only your permission.
If you choose to say yes now, you can always change your mind and stop taking part in any of these activities later. No matter what you choose to do you can still receive care from your child’s regular healthcare provider.
