Sign in to confirm you’re not a bot
This helps protect our community. Learn more

SYNGAP1 🧬 SSB30 Study: Seizures, Sleep & Behavior Study in partnership with Ciitizen

SynGAP Research Fund dba CURE SYNGAP1, 501(c)(3)
1.37K subscribers
<__slot-el>
<__slot-el>
121 views 4 years ago
â–ș Families with a SYNGAP1 diagnosis can participate at: https://www.ciitizen.com/syngap1 â–ș In this video Ciitizen PM and Syngap parent Virginie McNamar talks about the SSB30 Study: Seizures, Sleep & Behavior Study - 30 consecutive days of data with Ciitizen. If you have a child with SYNGAP1 that is enrolled in the Ciitizen Digital Natural History Study, we are thrilled to let you know that we are doing our first study built on the Ciitizen platform. A company who has a product that may help our kids, and has shown promising results in another country, is looking to understand if they can do a study with the same product here. This study, the SSB30, will lay the foundation for this next study. Essentially we are asking you to do two surveys and keep a 30 day seizure diary. These results will stay in your Ciitizen account and you will receive a gift card for your participation. Please join us to learn more about the study. â–ș Learn more about SynGAP research at: https://www.syngapresearchfund.org â–ș Follow SRF on twitter:   / curesyngap1   â–ș Like SRF on Facebook:   / curesyngap1   â–ș Connect with the Syngap Global Network for family support (Global):   / syngapglobalfamilysupport   â–ș Connect with SRF for family support (North America):   / syngapresearchfund   ...more
...more
SYNGAP1 🧬 SSB30 Study: Seizures, Sleep & Behavior Study in partnership with Ciitizen
2Likes
121Views
2021Apr 25
â–ș Families with a SYNGAP1 diagnosis can participate at: https://www.ciitizen.com/syngap1 â–ș In this video Ciitizen PM and Syngap parent Virginie McNamar talks about the SSB30 Study: Seizures, Sleep & Behavior Study - 30 consecutive days of data with Ciitizen. If you have a child with SYNGAP1 that is enrolled in the Ciitizen Digital Natural History Study, we are thrilled to let you know that we are doing our first study built on the Ciitizen platform. A company who has a product that may help our kids, and has shown promising results in another country, is looking to understand if they can do a study with the same product here. This study, the SSB30, will lay the foundation for this next study. Essentially we are asking you to do two surveys and keep a 30 day seizure diary. These results will stay in your Ciitizen account and you will receive a gift card for your participation. Please join us to learn more about the study. â–ș Learn more about SynGAP research at: https://www.syngapresearchfund.org â–ș Follow SRF on twitter:   / curesyngap1   â–ș Like SRF on Facebook:   / curesyngap1   â–ș Connect with the Syngap Global Network for family support (Global):   / syngapglobalfamilysupport   â–ș Connect with SRF for family support (North America):   / syngapresearchfund  

Follow along using the transcript.

SynGAP Research Fund dba CURE SYNGAP1, 501(c)(3)

1.37K subscribers