Why should I participate in the DFR?

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Why should I participate in the DFR?

We need your help to learn more about individuals with DDX3X Syndrome and provide researchers and therapeutic developers the data to pursue novel avenues toward a cure.

We believe you should register because:

  1. As a caretaker of a person living with DDX3X Syndrome, you know the disorder better than anyone. When you take surveys about your child's daily experiences and symptoms and share their medical records, you can help create a key resource for research. Every piece of data expands the information that researchers can draw from.
  2. Your voice matters in rare disease research! DDX3X Syndrome is rare so each person who chooses to participate can greatly expand the information available to researchers.
  3. It’s secure and easy to participate. Registration is simple and completed entirely online. With your informed consent to participate in research, you can contribute health data through surveys and by uploading medical records. The DFR is built to protect your identity and privacy.
  4. Your data can help bring us closer to a cure. The DFR data may help research and clinical trial progress more quickly and more efficiently. The data will be a powerful tool for clinical trials, treatments, and improved care.