► Learn more about SynGAP research at: [ Ссылка ]
Highlights from Elli discussing the SRF Ciitizen Digital Natural History Study. Families with a SYNGAP1 diagnosis can participate at: [ Ссылка ]
Ciitizen is a patient-mediated Software as a Service platform that allows users to collect and store their medical records. Ciitizen turns documents into computable, digital, and relevant datasets that can be shared at the user's discretion. In this video Elise Brimble, Certified Genetic Counselor, Head of Clinical Operations at Ciitizen, and Primary Investigator of SRF's SYNGAP1 Natural History Study walks us through the Ciitizen platform and the process of collecting and collating patient's medical records.
Chapters:
00:00 Welcome
00:10 What is Ciitizen?
00:30 The process
01:48 Who uses Ciitizen?
03:20 Discussion on SRF and Ciitizen's SYNGAP1 Natural History Study
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► Connect with Syngap Global Network for family support (Global):
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► Connect with SRF for family support (North America):
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