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
- 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
