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
67 clinical trials for this condition and its sub-types.
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Could a seizure drug also prevent sudden death in dravet syndrome?
Disease control Not yet recruitingThis study tests whether the drug Fintepla (fenfluramine) can improve how the brain and lungs respond to carbon dioxide in people with Dravet syndrome, a severe epilepsy. Poor responses to CO2 may increase the risk of sudden unexpected death in epilepsy (SUDEP). Twenty-five parti…
Phase: PHASE4 • Sponsor: The University of Texas Health Science Center, Houston • Aim: Disease control
Last updated Jun 27, 2026 12:03 UTC
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Study tests safer switch from street CBD to approved drug for kids with severe epilepsy
Disease control Not yet recruitingThis study looks at the best way to switch children with Dravet or Lennox-Gastaut syndrome from artisanal (non-pharmaceutical) cannabidiol to Epidiolex, an FDA-approved CBD medication. About 25 children aged 2 to 18 will gradually increase their Epidiolex dose while reducing thei…
Phase: PHASE4 • Sponsor: Elizabeth Donner • Aim: Disease control
Last updated Jun 27, 2026 11:02 UTC
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Saliva test may unlock genetic secrets missed by blood tests
Diagnosis Not yet recruitingThis study tests whether a simple saliva swab can find genetic causes of neurodevelopmental or intellectual disorders when standard blood tests have not. Researchers will use advanced DNA sequencing on cheek cells from 50 participants. The goal is to improve diagnosis and help gu…
Sponsor: Centre Hospitalier Universitaire de Besancon • Aim: Diagnosis
Last updated Jun 27, 2026 12:07 UTC
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French SOSI-M test under study for kids with developmental disorders
Diagnosis Not yet recruitingThis study aims to validate a French translation of the SOSI-M test, which measures sensory integration in children. Researchers will film 60 children (30 healthy, 30 with mild to moderate neurodevelopmental disorders) taking the test and compare scores. The goal is to see if the…
Phase: NA • Sponsor: Haute Ecole Ilya Prigogine • Aim: Diagnosis
Last updated Jun 27, 2026 08:12 UTC
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Can sensory tests improve counseling for kids with developmental disorders?
Knowledge-focused Not yet recruitingThis study will test whether using results from a sensory integration assessment can improve counseling for children aged 3-12 with neurodevelopmental problems like sensory sensitivity or coordination difficulties. Researchers will measure changes in sensory processing and daily …
Sponsor: Yeditepe University • Aim: Knowledge-focused
Last updated Jun 27, 2026 14:00 UTC
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New study explores low-tech aids to help non-verbal kids with autism communicate
Knowledge-focused Not yet recruitingThis study looks at using simple, low-cost communication tools like picture boards and gestures for children with autism who have trouble speaking. It involves 500 children and their caregivers in rural Virginia and western Kenya. The goal is to find better ways to match each chi…
Phase: NA • Sponsor: Indiana University • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:32 UTC
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New digital Game-Like tests aim to spot learning disorders earlier in kids
Knowledge-focused Not yet recruitingThis study will use a digital platform with game-like tasks to measure thinking and reading skills in 300 children aged 3-11 who are suspected of having a neurodevelopmental disorder. The goal is to create detailed cognitive profiles before a formal diagnosis, helping to identify…
Sponsor: IRCCS Eugenio Medea • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:23 UTC
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Wearable EEG gadget aims to perfect seizure drug dosing at home
Knowledge-focused Not yet recruitingThis study tests whether a wearable device that records brain waves, heart rate, and movement at home can help doctors better adjust the dose of the seizure drug fenfluramine for people with Dravet syndrome or Lennox-Gastaut syndrome. Twenty patients will wear the device for 3-7 …
Phase: NA • Sponsor: Byteflies • Aim: Knowledge-focused
Last updated Jun 27, 2026 07:56 UTC