About your Child

Please take a moment to fill out this form. The information in the form is critical to helping researchers learn about and understand the DDX3X gene mutations that affect our children.

Your participation could help all individuals affected by DDX3X.

Please contact us with any questions about the form.

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What is your contact preference?
When is best to contect you
Child's Gender
Child's Ethinicity
To select more than one, click on the option with the ‘shift’ case selected.
MRI results
Blood samples
Neurodevelopmental / IQ testing
Skin biopsy
Blood samples (Parents)
Skin biopsy (Parents)
Would you be interested in enrolling your child in a Natural History study of DDX3X?
This is a study that will follow patients with the condition over time to better understand the many features and changes that can take place over time, and can help researchers understand which features can be targeted for improvement with a therapy
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Help further our efforts to find a cure for DDX3X Syndrome, and support those affected by it.

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Registry

Register today to help expand what we know about DDX3X Syndrome and stay connected to our community.

Registry

Contact

We’re here to answer your questions and help connect you to our community.

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