Weekly Updates! - June 27, 2024

Weekly Updates! - June 27, 2024

Hello everyone! I hope you’re having a great week! Here are some TBRS Community updates from this week:

• • EVENT: TBRS Friends and Family Support Group THIS WEEKEND
    • Our next support group will be this Saturday, June 29, 2024 from 3-4pm EDT.
    • This is a virtual meeting. Meet with other parents, families, friends,. and caregivers, and get to know one another. All are welcome!
      • Click here to join the zoom meeting!
      • To stay involved and be aware of all upcoming events, subscribe to our Google calendar here!
• • Ciitizen is now Citizen Health → signing up has never been easier!
    • Exciting News: Citizen Health, formerly Ciitizen, has launched a brand new onboarding experience - and it’s better than ever!
      • We’ve teamed up with Citizen Health for the easiest way to build vital natural history studies for our community.
      • REMINDER: Citizen Health is a program that will collect all medical records in one convenient, online location. These records can then be shared with researchers, if you so choose!
    • Help us reach our goal! It just takes five minutes to sign up, completely digital.
      • Citizen Health is currently only able to collect records for participants in the United States, BUT participants can join around the globe and upload their own documents.
        • Citizen Health is currently running trials to expand to other english-speaking countries, and then plan to extend further!
    • Click here to sign up for Citizen Health!

• New video - Interpreting your genetic report!

• • • I have been working with our intern, Kaho Kato, to develop a video explaining how to interpret a genetic report!
      • We’ve heard from families who have found it difficult to understand the information presented in their report.
      • We hope this video will assist in this!
    • The video should be completed in the next few weeks. I will make a post announcing it when it has been completed.
    • As always, if you have any questions or need private assistance with interpreting your report, please contact me at kit@tbrsyndrome.org

• TBRS Patient Registry - no consent or no surveys completed?

• • There are some Participants in the TBRS Patient Registry that either have:
    • Not consented to participate in the TBRS Patient Registry, or
    • Have not completed any surveys
  • If you are one of these participants, I have likely already reached out to see if this was intentional!
    • Please keep an eye out for these messages
  • REMINDER: you are not required to participate in the TBRS Patient Registry and can revoke consent at anytime
    • To participate in the TBRS Patient Registry, click here!

• REMINDER: TBRS Registry → call for MRI imaging data - INFO coming soon
  • We have a researcher who is interested in studying how an area of the brain is affected in TBRS through the use of MRI data from the registry.
    • If you have MRI reports and/or images that you have not uploaded to the patient registry, we encourage you to do so!
    • I will be looking into how best to obtain this data in the coming week and will share this information next friday.
      • MRI data can also be sent to our Research Coordinator at kit@tbrsyndrome.org.
      • To upload to the registry, please click here.

Thank you, and I hope you have a great weekend!Kit Church, Research Coordinator