The DFR Can Help Advance Your Research

The DXX3X Foundation Registry (DFR) aggregates data from patient-reported outcomes, medical records, and biospecimens to form a more complete picture of individuals with DDX3X Syndrome. We can assist your research efforts in a number of ways:

  • Provide access to previously collected DFR data
  • Help collect new data from DFR participants
  • Help you find participants for your own study
  • Release new surveys to help you better understand DDX3X Syndrome

We are committed to sharing DFR data, in order to foster engagement with this rare disease. Please email to learn more about accessing data from the DFR. We look forward to working with you to help you study DDX3X Syndrome.