October 6, 2026
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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