Register for the DDX3X Registry

If you or your child is affected by DDX3X Syndrome, you can help advance research by participating in the DDX3X Registry. Your data can help find better treatments and a cure.


  1. Identify individuals with DDX3X Syndrome
  2. Gather data through voluntary registration, self-reported survey responses, and patient-mediated medical record collection
  3. Make data available to researchers and clinicians who are studying DDX3X Syndrome to answer questions related to the disease, including its symptoms, treatments, and other topics
  4. Be the primary hub of clinical trial recruitment for individuals with DDX3X Syndrome

Why Register?

  1. You know your disease better than anyone
  2. You voice matters in rare disease research
  3. It's secure and easy to participate
  4. Your data can help bring us closer to a cure