Weekly Updates! - July 5, 2024

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