Weekly Research Updates! - December 15, 2023

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 kit@tbrsyndrome.org with questions
• Regional Coordinators program
  • We are looking for enthusiastic volunteers for our Regional Coordinator program
  • Regional Coordinators provide support and resources to the patients and families in their area - to ensure no one is ever left behind
  • Contact Kit if interested!
  • More information: https://tbrsyndrome.org/wp-content/uploads/2023/08/TBRS-Volunteer-Form.pdf (page 6)
• 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