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!
    • 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 [email protected] 
  • 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.

Thank you, and I hope you have a great weekend!

Kit Church, Research Coordinator

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