About The Study
Goals of the Study
Parents often have questions when they find out their child has a fragile X premutation and the available information is very limited. We are trying to broaden knowledge about premutation alleles and child development to help parents stay informed. Whether your child has a premutation or not, your participation is essential for helping to answer some of those questions. This study is funded by the National Institutes of Health (NIH).
How the Study Works
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You are here
You were invited to this study because you or your family member had prenatal testing done through the New York State Institute for Basic Research (IBR).
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Part 1 of the Study
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Complete questionnaires
After enrollment, you (the parent) will be asked to complete three standardized questionnaires about your child. If you have more than one child aged 3 to 13 years old, you can complete questionnaires for all children. These may take from 45 minutes to an hour to complete.
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Receive compensation for completion
Upon completion of the questionnaires you will receive a $20 gift card per child.
Part 2 of the Study
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Families who complete the questionnaires above and have children who are 8 to 13 years old may be invited to participate in Part 2 of the study.
We hope to work directly with children who are between 8 and 13 years old, by asking them questions about their academic, attention, language, and visuospatial skills. We will do this via zoom so your child can participate from home. A trained clinical assessor will administer standardized tests to each child in an engaging and interactive manner. We will also request that parents complete additional questionnaires. You will receive a brief written summary of findings from your child's assessment.
Lisa Shubeck at Emory University will contact eligible families. Lisa will describe what is involved. Lisa will also send you a comic book to describe the study that you can share with your child. The comic book shows in easy-to-understand pictures and words what your child can expect from participation, to ensure they understand what they are being asked to do and are not nervous. You can also view this comic book here.
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A clinical assessor will meet with your child via Zoom
A qualified clinical assessor will work directly with your child via a private HIPPA-compliant Zoom meeting to get detailed information about your child's cognitive and behavioral skills. Your child will be asked to complete different tasks that measure academic, attention, verbal, and visuospatial skills. This may take about 4 hours but this time may differ for each child.
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Children will be given a certificate and choice of a gift for their participation
At the end of the child's participation, all children will be given a certificate for their contribution. Children will be shown an array of small gifts (such as an age-appropriate craft kit, puzzle, toy, art supplies, or book) and asked to choose one which will then be sent to their home.
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Parents will complete additional questionnaires online
The parent will be asked to complete additional questionnaires about their child's background, behavior, and adaptive skills. This information, combined with the direct assessment of children's skills, will give us a comprehensive picture of your child's individual strengths and weaknesses. Mothers will also be asked to complete questionnaires about their own background and behavior.
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Families will receive some compensation and a brief report of their child's findings for completing the study
On completion of both the assessment and the questionnaires, families will be sent a $200 gift card for each child assessed. If you or your child do not complete all sessions, your payment will be prorated for the sessions that were completed. Additionally, parents will receive a brief written summary about their child's performance.