Title:
What are the goals of the DFR?
The DFR has 4 main goals:
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Identify individuals with DDX3X Syndrome
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Gather past and future information on individuals with DDX3X Syndrome through voluntary registration, self-reported survey questionnaires, and patient-mediated medical record collection
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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
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Be the primary hub of clinical trial recruitment for individuals with DDX3X Syndrome