Weekly Updates! - November 27, 2024

Weekly Updates! - November 27, 2024

Hey everyone! I hope everyone has had a great week so far! Jill and I will be out of the office for Thanksgiving this Thursday and Friday, but I wanted to post some quick reminders for this week:

• • Reminder: Sign up for Citizen Health to accelerate TBRS research!
    • 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.
      • 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.
      • We need 7 more participants by November 30 to access exciting new data for research!
      • 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!

• Reminder: Upcoming Study Using TBRS Patient Registry Data

• • Dr. Kate Tatton-Brown is planning to publish on the TBRS Patient Registry data, particularly on symptoms and experiences of those with TBRS!
    • This will greatly help us to have solid information on lesser-known symptoms of TBRS, and improve clinical care for those with TBRS
  • If you have not participated in the Registry and would like to be involved, please consider signing up and completing surveys by December 1, 2024!
  • 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!

Thanks and I hope you have a great weekend!Kit Church, CARE Manager