*Update, April 2022: There is currently a change in the study's principal investigator (PI). For the time being, please get a copy of the tracing and get added to a waitlist for submission when a new PI is on board. (See below for details).
Does your child have an overnight EEG or sleep study coming up, or have they had one recently? Consider submitting the tracings to science!
A research study at Kennedy Krieger Institute is seeking overnight/24-hour EEG and sleep studies tracings from children ages 2-16 years old. The study needs tracings of SYNGAP1 patients or their unaffected siblings. Any long duration EEG with sleep involved will do, including ambulatory/home-based ones or those done in an Epilepsy Monitoring Unit (EMU). As of the time of publication (March, 2022), participation is open to US patients only.
The data will help researchers better understand the relationship between SYNGAP1 mutations, epilepsy, and sleep dysfunction. They’ll also be looking for possible biomarkers associated with SYNGAP1.
The importance of requesting these tracings for your own record keeping purposes and future research is discussed on episode 48 of SYNGAP10 between minutes 3:55 and 5:56. Watch it here.
Thank you for being willing to further the ongoing research efforts for SYNGAP1 by obtaining these crucial records. We hope that your child’s appointment is a positive experience for all who are involved.