Participating in clinical trials is an important way to help accelerate therapeutic development. There is currently one SCN8A-specific study enrolling, as well as one for Developmental and Epileptic Encephalopathies (DEE). Find more information about each study below.

Praxis Precision Medicines: PRAX-562
​Embold Study - Phase 3

Sept. 2024: Praxis Precision Medicines has announced positive topline results from Phase 2 of the Embold study
Emboldstudy.com is live, allowing the opportunity for caregivers of those diagnosed with SCN2A and SCN8A DEE to see the inclusion and exclusion criteria and schedule a pre-screening call with a nurse navigator. This provides the caregiver with access to a live person to assist them and answer questions.  Estimated completion: March 2027
The Embold Study aims to advance a clinical-stage, investigational treatment built for children with early-onset SCN2A and SCN8A developmental and epileptic encephalopathies (DEEs).
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This is a Phase 3, placebo-controlled clinical trial to evaluate the safety and effectiveness of Relutrigine (PRAX-562) in reducing seizures. The trial will last up to 22 weeks for part A, with an option to continue receiving Relutrigine after the completion of the study.

​​Choose between fully remote, in-clinic, or combined participation. If your family chooses to attend in-clinic study visits, all expenses for travel, lodging, meals, and any other costs associated with study participation will be paid for by the sponsor.
To learn more about this study, you or your doctor may contact the study research staff:
Head of Pharmacovigilance
617-300-8460
[email protected]​
ClinicalTrials.gov identifier (NCT number): NCT05818553

Praxis Trial Sites

(USA and International)
Recruiting
Chicago, IL
Praxis Research Site
Chicago, Illinois, United States, 60611

Minneapolis, Minnesota
Praxis Research Site
​Minneapolis, Minnesota, United States, 55113

Hackensack, New Jersey
Praxis Research Site
Hackensack, New Jersey, United States, 07601

​​Fully remote from your home
​[email protected]​

Not Recruiting
Atlanta, GA—Active, Not Recruiting
Praxis Research Site
Atlanta, Georgia, United States, 30329

 Longboard Pharmaceuticals: LP352-301
​DEEp Ocean Study  - Phase 3

This (DEEp OCEAN Study) is a double-blind, randomized, placebo-controlled, multicenter study to investigate the efficacy, safety, and tolerability of LP352 in the treatment of seizures in children and adults with Developmental and Epileptic Encephalopathies (DEE).

​Eligible participants include individuals aged 2 to 65 who have been diagnosed with Developmental and Epileptic Encephalopathies (DEE) and have experienced the onset of seizures from birth to 8 years of age for people with Lennox-Gastaut Syndrome (LGS) or birth to 5 years old for people with DEE (other). Additionally, they have experienced an average of four seizures per month over the past three months.​

Families are able to choose which site they'd like to travel to for the trial, as long as that site is accepting referrals. Longboard will provide travel assistance for up to three caregivers.
To learn more about this study, you or your doctor may contact the study research staff:
Longboard Study Contact
858-999-8858
[email protected]
ClinicalTrials.gov identifier (NCT number): NCT06719141

Neurocrine Biosciences: NBI-921352
​Kayak Study (Discontinued)

The Kayak Study has been discontinued. TCSF is planning a fireside chat with Neurocrine in the coming weeks to discuss their plans and provide an opportunity for families to ask questions. We will share the date and time as soon as possible.

Clinical Trial Information

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