SYNGAP1 Communication Ability Survey

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We are asking our SYNGAP1 Ciitizens (people enrolled in the Ciitizen Study) to please fill out this short survey urgently. We are working with researchers at Duke via COMBINEDbrain -- of which SRF is a member -- to expand the ORCA Communication Scale to include SYNGAP1 patients. This information will be used to develop a cohort of patients for the interview section of the study. Our goal is to share a broad spectrum of the SYNGAP1 communication ability. If you are not invited to an interview you will still be able to participate in part two of the study and help inform this critical work for the benefit of our entire community!

There are three sections:
1. Eligibility and Willingness
2. Demographic Information
3. Communication Profile

Email *

Are you enrolled in ciitizen.com/SYNGAP1 ? If not, please note that you can enroll at no cost now -- this important dataset is critical for accelerating therapeutic development. *

Yes

Are you willing to take part in a web/phone interview of up to an hour with expert researchers and then to take an online survey? Total commitment should not be more than 2 hours. *

Yes

How old is your SYNGAPian, please note that this study is currently only available for SYNGAPians age 1-19. *

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