You're invited

You are being asked to participate in surveys as part of the Early Check research study. We ask you to join because your baby was found to have fragile X premutation (FXPM) through Early Check screening. It is your choice whether to answer the surveys.
The purpose of the surveys is to learn about mothers’ experiences taking part in Early Check and getting the results about their baby. We will use this information to develop better ways to support parents who learn their baby has the FXPM.
The University of North Carolina and RTI International are leading the study. We are asking all mothers of babies identified with FXPM to take part in the surveys.

At approximately 3 months and 6 months after you got your baby's Early Check second (confirmatory) test results, we send you an email, text, and/or letter to ask you to complete a brief online survey that will take around 15-20 minutes to complete.
We may send you additional surveys later, for up to 24 months after you got your baby’s Early Check second test results.
You would be able to decide whether to answer each survey.

The questions in the survey are about experiences with Early Check and having a baby identified with FXPM.
Some questions may make some mothers feel emotional or worried.
You would not have to answer any question that you don’t want to answer.

While completing the survey, you might realize you have questions about your baby’s Early Check results or about FXPM. You can contact us with any questions or concerns.
Even if you decide not to answer the surveys you can still contact us with any questions or concerns.

We would keep the information we collect in this study private and confidential.
The study team would not disclose your name or your personal information to anyone outside of the research team.

It is your choice whether to answer the surveys.
If you choose to complete the surveys, you can skip questions in the survey or stop answering at any time.
It’s OK if you do not want to participate. You and your baby can still be included in other Early Check research if you want.

If you have questions about Early Check or your participation in these surveys, you can call the project genetic counselor, Beth Boyea, at GeneticCounselor@EarlyCheck.org. She will respond to your message between 9:00 AM and 5:00 PM Eastern Time Monday to Friday.
If you have questions about your rights as a participant, you can contact UNC’s Office of Research Protection toll-free at 919-966-3113 or by email to IRB_subjects@unc.edu.

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