Weekly Research Updates! - December 15, 2023

  • Using the Clinical Research ID (CRID) to connect Registry data and Biorepository samples
    • Doing this makes the data stronger for research! 
    • If you donated at the Summit, consider adding the CRID to the Registry
    • Email me at [email protected] with questions
  • Regional Coordinators program
  • I am continuing to make updates to the registry prior to launching 2.0!
    • We will be including all DNMT3A variants, not just those that cause TBRS.
    • We are prioritizing standardized surveys for your priorities; mental health, cardiac, and seizures.
  • Overgrowth Syndrome Alliance (OSA) Paper
    • This is due at the end of december
    • Our paper will be advertising what we have for research to encourage sponsors, pharma, and researchers
    • I will make a post when/if this is published
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