SYNGAP1 Communication Ability Survey
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