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Epilepsy Treatment Study (Kayak Study)

Research Question:
Can the investigational drug NBI-921352, which selectively binds with a specific sodium channel, Nav1.6 whose activity is impacted by the SCN8A gene, decrease the frequency of seizures and improve the quality of life for those suffering from a rare form of epilepsy known as SCN8A developmental and epileptic encephalopathy (SCN8A-DEE)?

Basic Study Information

The study, known as the Kayak Study, looks at how the investigational drug affects the symptoms, quality of life, severity of seizures, and frequency of seizures when compared to a placebo (inactive drug) in individuals 2-21 years of age diagnosed with SCN8A-DEE.

Location: University of Rochester
Study Web URL:
Study Reference #: 00006603

Lead Researcher (Principal Investigator)

Lead Researcher:  Inna Hughes

Study Contact Information

Study Coordinator: Cate Concannon
Phone: (585) 275-0589

Additional Study Details

Study Details:
The study will last for approximately 24 weeks for participants enrolling in the open-label extension study and approximately 30 weeks (24 weeks plus 2-week taper period and 4-week safety follow-up period) for participants who choose not to enroll in the extension study.

Number of Visits:  6 to 10
Parking:  Reimbursed
Transportation Coverage: 
Reimbursement:  Yes

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