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
Purpose:
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: http://www.kayakstudy.com
Study Reference #: 00006603
Lead Researcher (Principal Investigator)
Lead Researcher:
Inna Hughes
Study Contact Information
Study Coordinator: Cate Concannon
Phone: (585) 275-0589
Email: Cathleen_Concannon@urmc.rochester.edu
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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