Weekly Research Updates! - October 27, 2023

Weekly Research Updates! - October 27, 2023

• Ciitizen
  • We have officially launched!
  • Link: https://www.ciitizen.com/rarenetwork/?utm_source=TBRS+Community&utm_medium=Advocacy&utm_campaign=Recruitment&utm_content=RPN
• Patient Registry 2.0 - info on changes being made to the Registry
  • we are planning to include other DNMT3A variants
  • We are also getting feedback from those who have gone thru the Registry data to figure out what changes would be helpful for researchers!
• Regional Coordinators program and Patient Advisory Committee
  • Please message me if you are interested in any of these opportunities (kit@tbrsyndrome.org)
• We are looking for cardiac and psychiatric specialists to join our Collaborative Research Network
• Social media posts about research coming (like talking to researchers and recording those questions)
• We are meeting with COMBINEDBrain to get information on all of the TBRS samples available in the Biorepository
• Research Roundtable 3 will be happening soon!
  • We will provide updates on this as they come!

Thanks everyone!Kit Church, Research Coordinator