Now Enrolling for this Follow-on Study!
Institution: John Carroll University
Principal Investigators: Dr. Thomas Frazier, PhD
Funding: N/A
Inclusion Criteria:
- SYNGAP1 diagnosis between the ages of 2-60
- Must have a participating parent or other knowledgeable information provider
- Access to reliable internet connection
- Access to a tablet, laptop, or desktop computer with a webcam
- English is the primary spoken language in the home
Key point for the NET project:
- Parents are asked to complete a survey about their child
- Participating children are asked to complete a webcam performance measure that includes watching 5 videos aimed to measure attention skills, processing speed, language skills, and memory skills (please view video this video if you would like more information on this)
- The survey will take about 35 – 40 minutes to complete
- The videos will take about 15 – 23 minutes to complete but breaks are encouraged!
- Parents are asked to complete the survey 5 times (initially, 3-months later, 6 months later, 9-months later, and 12 months later)
- Children are asked to complete the webcam videos as best they can 5 times (initially, 3-months later, 6 months later, 9-months later, and 12 months later)
- Compensation for this project will be a $20 Amazon e-gift card for every survey completed and a $20 Amazon e-gift card for every attempt to complete the webcam performance measures. (Possible total of $120.00 in Amazon Gift Cards)
How to sign up: Email Katie Huba at khuba@jcu.edu or call either (216) 397-4465 (office) or (412) 298-8749 (cell)
Please also contact: Corey Baysden, CURE SYNGAP1 via corey@curesyngap1.org