104 - Overnight EEG and Sleep Study Tracings Needed for Research Study

*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).

‍So You’re Getting an EEG or Sleep Study

Does your child have an overnight EEG or sleep study coming up, or have they had one recently? Consider submitting the tracings to science!

What is needed?

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.

Why? How will it be used?

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.

How can I participate?

1. If you would like to participate in this study, please contact Corey Baysden at corey@syngapresearchfund.org and she will add you to the waitlist.
2. At your appointment, ask for the tracings from your child’s EEG or sleep study from the lab as an .EDF format. You want the actual tracing, not just the report. This will be a large file, so you’ll most likely receive it on a CD or flash drive. You may get it the day of the appointment or sometime after. Once you receive the tracing, please hold onto it for now. Once a new PI is assigned, we'll instruct you to send the tracing to them.
3. Note: If you have the ability, you may want to keep a copy for your records before sending.
4. The PI will also ask for relevant medical records. If your child is enrolled in Ciitizen, it’s as easy as going into the app and clicking Share.  If you child is not enrolled in Ciitizen, please sign up at ciitizen.com/SYNGAP1. 
   

For More Information:

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.