This registry was created to serve the patient, physician, and research communities.


We support research by making information and affected families easily accessible for the organizations and individuals with the talent and resources to make a different.

We support families by sharing experiences and guiding them through the life with DDX3X.

We support our children by loving them, advocating for them, and educating the world about DDX3X.

This registry is a large and critical component of this mission of support. Please consider registering your child.

Why Join the Registry?

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Making access to information and families easier encourages and supports research into DDX3X mutations


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Research is happening right now. Events and groups are being formed. Stay in the loop!

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Everyone in our community has heard the same diagnosis you have. Learn from our experience living with and loving our DDX3X children.

Get Started

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The information is handled according to the Terms and Conditions. In short, the information is compiled together to create research friendly data for medical and genetic researchers.

Your child was just diagnosed. Here’s a few things you can do to get involved.
  • Please fill out the ddx3x┬áregistry so we know how to reach you.
  • Join our facebook group
  • Participate in the current studies
    • Provide skin samples to Coriell
    • Provide MRIs to Dr Sherr
    • Contact us for more information