Weekly Updates! - July 5, 2024

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

  • TBRS & DNMT3A Patient Registry – NOW TESTING!
      • We have been working to update our Patient Registry for some time now
        • Some of these changes include using standardized surveys, including Heyn Sproul Jackson Syndrome, and translating the Registry into other languages.
      • We are excited to say that we have moved into the testing phase for these changes!
        • In the next few weeks, we will be testing these surveys, and will need volunteers to test as well.
        • I will provide more information when we begin looking for volunteer testers. 
  • New Family Welcome Packet – Looking for Translations!
    • The TBRS Community New Family Welcome Packet is a resource that details all of the programs and research opportunities available to TBRS Community families.
    • We know our global community would benefit from translations of this resource, and others.
      • Currently, the New Family Welcome Packet is translated into Spanish
      • We also have our intern, Kaho, translating this resource into Japanese, which will be available soon.
    • If you are available to translate this resource into other languages, please consider volunteering! This would greatly benefit members of our community who speak other languages!
  • REMINDER: 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!

I am off next week, but will provide an extended update on Friday, July 19. Thank you, and I hope you have a great weekend!

Kit Church, Research Coordinator

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