Weekly Research Updates! - November 10, 2023

  • Reimbursements for the Summit are all out
    • One left, but unless I have contacted you, all of the reimbursements are out. 
    • Please let me know if there are any issues
  • A couple more genetic reports needed for CB and the Baylor study
    • I have contacted you and will continue to be annoying (sorry!)
  • Changes to registry – including ALL DNMT3A variants
    • There will be changes to the surveys – standardized surveys
    • Old information will be kept! That is not lost information!
    • Once the new surveys are launched, we will let you all know 
    • Please do updates with these once they are launched!
  • Patient Priority Survey – now in Spanish
  • EEG repository 
    • Getting some ideas and brainstorming
    • Ideas for Google drive, vs at academic institutions, etc.
    • Let me know if you have any thoughts or opinions on this 
  • Ciitizen
    • Normally just United States
    • International can sign up and upload their own docs
    • Launching Canada and Australia soon
  • American Epilepsy Society – 2023 Conference
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