Weekly Research Updates! - November 10, 2023

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