Infantile spasms
MONDO:0018097A rare epilepsy syndrome characterized by onset of epileptic spasms in infants between 2 and 12 months of age, and rarely up to 24 months. Infants may have no antecedent history, or a history reflecting the underlying cause. The classical triad of epileptic spasms, hypsarrhythmia and developmental stagnation or regression is historically referred to as West syndrome.
Also known as: IESS, West syndrome, West's syndrome, infantile epileptic spasms syndrome, infantile spasms, infantile spasms syndrome, intellectual disability-hypsarrhythmia syndrome, X-linked infantile spasm syndrome
24 clinical trials for this condition and its sub-types.
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Broader categories
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New hope for kids with rare epilepsy: drug trial targets seizure control
Disease control OngoingThis study tests an investigational drug called relutrigine in 160 children with a severe form of epilepsy called developmental and epileptic encephalopathy (DEE). The goal is to see if the drug can safely reduce monthly seizure frequency compared to a placebo. After the initial …
Phase: PHASE3 • Sponsor: Praxis Precision Medicines • Aim: Disease control
Last updated Aug 06, 2026 00:00 UTC
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Real-World study tracks Epidyolex's Long-Term impact on seizures
Disease control OngoingThis study follows 158 people in France who are prescribed Epidyolex (a cannabidiol-based medicine) for seizures as part of their normal care. Researchers will track how long people stay on the treatment, side effects, seizure frequency, and changes in daily functioning and quali…
Sponsor: Jazz Pharmaceuticals • Aim: Disease control
Last updated Jun 27, 2026 14:00 UTC
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New hope for rare epilepsy: drug shows promise in phase 3 trial
Disease control OngoingThis Phase 3 study tests whether fenfluramine (ZX008) can safely reduce seizures in 87 children and adults with CDKL5 deficiency disorder, a rare genetic condition causing severe epilepsy. Participants receive either the drug or a placebo, followed by an open-label extension wher…
Phase: PHASE3 • Sponsor: Zogenix, Inc. • Aim: Disease control
Last updated Jun 27, 2026 12:24 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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New inhaler aims to stop prolonged seizures fast and safely
Symptom relief ENROLLING_BY_INVITATIONThis study tests the long-term safety of an inhaled medication called Staccato alprazolam for people aged 12 and older who have prolonged seizures. About 300 participants will use the inhaler when a seizure starts to see if it stops the seizure quickly and without serious side ef…
Phase: PHASE3 • Sponsor: UCB Biopharma SRL • Aim: Symptom relief
Last updated Aug 16, 2026 00:00 UTC
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New registry aims to unlock secrets of rare CDKL5 disorder
Knowledge-focused TerminatedThis study creates a registry for up to 500 people with CDKL5 Deficiency Disorder (CDD), a rare genetic condition that causes seizures and developmental delays. Patients and their caregivers will provide information about symptoms, treatments, and quality of life over several yea…
Sponsor: University of Pennsylvania • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:23 UTC