What are the goals of the DFR?

What are the goals of the DFR?

The DFR has 4 main goals:

  1. Identify individuals with DDX3X Syndrome

  2. Gather past and future information on individuals with DDX3X Syndrome through voluntary registration, self-reported survey questionnaires, and patient-mediated medical record collection

  3. Make data collected through the DFR available to researchers and clinicians who are studying DDX3X Syndrome to answer questions regarding the disease, including its symptoms, potential treatments, and other topics

  4. Be the primary hub of clinical trial recruitment for individuals with DDX3X Syndrome