Dravet syndrome
MONDO:0100135Dravet syndrome is a channelopathy with epilepsy of with onset during the first year of life, typically 4-5 months, characterized by status epilepticus and a variety of drug-resistant seizures often induced by fever, presenting in previously healthy children, and which frequently leads to cognitive and motor impairment. Dravet differs from other channelopathies usually due to a mutation in SCN1A.
Also known as: DS, Dravet, Dravet syndrome, SME, SMEB, myoclonic epilepsy, severe, of infancy, severe myoclonic epilepsy of infancy
52 clinical trials for this condition and its sub-types, 39 tagged with Dravet syndrome itself.
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New hope for dravet syndrome: phase 3 trial of LP352 aims to cut seizure frequency
Disease control OngoingThis study tests whether the drug LP352 can safely reduce seizures in children and adults with Dravet syndrome, a severe form of epilepsy. About 160 participants will receive either LP352 or a placebo, and researchers will track changes in seizure frequency over several months. T…
Phase 3 • Sponsor: Longboard Pharmaceuticals • Aim: Disease control
Last updated Sep 19, 2026 00:00 UTC
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New drug LP352 aims to control seizures in severe epilepsy over the long term
Disease control By invitation onlyThis phase 3 study is testing the long-term safety and effectiveness of LP352 (Bexicaserin) in 324 children and adults with developmental and epileptic encephalopathy (DEE), including Dravet and Lennox-Gastaut syndromes. Participants who completed earlier studies will receive LP3…
Phase 3 • Sponsor: Longboard Pharmaceuticals • Aim: Disease control
Last updated Sep 17, 2026 00:00 UTC
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Gene therapy trial aims to tame seizures in kids with rare epilepsy
Disease control OngoingThis early-stage study tests a gene therapy called ETX101 in 5 children with Dravet syndrome, a severe form of epilepsy. The therapy delivers a gene that helps calm overactive brain cells. Researchers will check if it safely reduces seizure frequency and improves thinking and dai…
Phase 1/2 • Sponsor: Encoded Therapeutics • Aim: Disease control
Last updated Jun 27, 2026 13:04 UTC
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CBD epilepsy drug under Real-World watch for rare seizure disorders
Disease control OngoingThis study follows about 111 people with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex who are taking Epidyolex (a CBD oral solution) for seizures. Researchers track how many stay on the drug for a year and how many seizure-free days they have. It's an o…
Sponsor: Jazz Pharmaceuticals • Aim: Disease control
Last updated Jun 27, 2026 13:01 UTC
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New hope for rare epilepsy: fenfluramine made available for dravet patients
Disease control ApprovedThis study offers fenfluramine to people with Dravet syndrome whose seizures have not improved with other medications. The goal is to provide access to the drug and monitor its safety. Participants must have a genetic diagnosis of Dravet syndrome and have tried all available seiz…
Sponsor: University of California, Los Angeles • Aim: Disease control
Last updated Jun 27, 2026 12:09 UTC
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Hope for dravet syndrome: Long-Term safety trial of STK-001 underway
Disease control OngoingThis study looks at the long-term safety of an experimental drug called zorevunersen (STK-001) in 60 people with Dravet syndrome, a severe form of epilepsy. Participants must have completed an earlier STK-001 study. Researchers will monitor side effects, seizure frequency, and qu…
Phase 2 • Sponsor: Stoke Therapeutics, Inc • Aim: Disease control
Last updated Jun 27, 2026 09:01 UTC
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New hope for dravet syndrome: expanded access to seizure drug stiripentol
Disease control ApprovedThis program provides expanded access to the drug stiripentol for people aged 6 months and older with Dravet syndrome, a severe form of epilepsy. The goal is to help control seizures that do not respond to other treatments. Participants must have a confirmed diagnosis and meet sa…
Sponsor: Children's Hospital Medical Center, Cincinnati • Aim: Disease control
Last updated Jun 27, 2026 08:13 UTC
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Gene therapy trial aims to tame severe seizures in kids with dravet syndrome
Disease control OngoingThis study tests a gene therapy called ETX101 in 4 children with Dravet syndrome, a severe seizure disorder caused by a gene change. The therapy uses a harmless virus to deliver a working copy of the gene to brain cells. The main goals are to see if it is safe and if it reduces s…
Phase 1/2 • Sponsor: Encoded Therapeutics • Aim: Disease control
Last updated Jun 27, 2026 07:57 UTC
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Newborn screening study aims to catch rare diseases at birth
Diagnosis OngoingThis study offers voluntary screening for newborns in North Carolina to detect a wide range of rare health conditions early. Using a small blood sample already collected at birth, the program tests for dozens of disorders, including spinal muscular atrophy, cystic fibrosis, and m…
Sponsor: RTI International • Aim: Diagnosis
Last updated Jul 03, 2026 00:00 UTC
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Epidiolex liver check: is Long-Term use safe?
Knowledge-focused OngoingThis study follows 154 people taking Epidiolex (cannabidiol) for seizures caused by Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex. Researchers will monitor for signs of chronic liver injury and fibrosis over time using blood tests and liver scans. The go…
Phase 4 • Sponsor: Jazz Pharmaceuticals • Aim: Knowledge-focused
Last updated Aug 28, 2026 00:00 UTC
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Counting the uncounted: a nationwide look at two rare epilepsies
Knowledge-focused CancelledThis observational study aims to measure how many people in Portugal have Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare and severe forms of epilepsy. Researchers will review existing medical records from about three public hospitals to estimate the percentage of…
Sponsor: Takeda • Aim: Knowledge-focused
Last updated Aug 19, 2026 00:00 UTC
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New study aims to predict sudden death in severe epilepsy
Knowledge-focused OngoingThis study looks at how repeated seizures affect breathing and heart function in people with Dravet syndrome, a severe form of epilepsy. Researchers will monitor 92 children and adults for 24-48 hours using video, brain wave, heart, and breathing recordings. The goal is to find c…
Sponsor: Hospices Civils de Lyon • Aim: Knowledge-focused
Last updated Jun 27, 2026 08:11 UTC