Neonatal-onset encephalopathy with rigidity and seizures
MONDO:0013784A rare genetic neurological disorder characterized by neonatal onset of rigidity and intractable seizures, with episodic jerking already beginning in utero. Affected infants have small heads, remain visually inattentive, do not feed independently, and make no developmental progress. Frequent spontaneous apnea and bradycardia usually culminate in cardiopulmonary arrest and death in infancy, although some cases were described with a milder clinical course and survival into childhood. The cause of the disease is a variation in the BRAT1 gene.
Also known as: lethal neonatal rigidity-multifocal seizure syndrome, lethal neonatal spasticity-epileptic encephalopathy syndrome, neonatal-onset encephalopathy with rigidity and seizures, RMFSL, rigidity and multifocal seizure syndrome, lethal neonatal
17 clinical trials for this condition and its sub-types, 0 tagged with Neonatal-onset encephalopathy with rigidity and seizures itself.
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New epilepsy drug shows promise in long-term safety trial
Disease control CompletedThis study tested the long-term safety of a drug called LP352 (bexicaserin) in 41 people aged 12 to 65 with severe epilepsy syndromes like Dravet or Lennox-Gastaut. Participants took the drug three times daily for up to 52 weeks. The main goal was to check for side effects, while…
Phase 2 • Sponsor: Longboard Pharmaceuticals • Aim: Disease control
Last updated Jun 27, 2026 08:01 UTC
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New hope for rare seizure patients: Long-Term drug safety confirmed
Disease control CompletedThis study looked at the long-term safety of a drug called fenfluramine (ZX008) for people with rare seizure disorders like Dravet syndrome and Lennox-Gastaut syndrome. A total of 412 participants who had completed earlier studies took the drug and were monitored for side effects…
Phase 3 • Sponsor: Zogenix, Inc. • Aim: Disease control
Last updated Jun 27, 2026 07:58 UTC
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Routine EEGs may hold hidden clues to childhood epilepsy — a new analysis method is put to the test
Diagnosis CompletedThis study is testing whether a computer tool called BioEP can detect signs of seizure susceptibility in standard EEG recordings from children with epilepsy. Researchers will analyze past EEGs from 530 children aged 2 to 18 who already have an epilepsy diagnosis. The goal is to s…
Sponsor: Neuronostics Ltd • Aim: Diagnosis
Last updated Aug 01, 2026 00:00 UTC
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New drug candidate TAK-935 tested for Hard-to-Treat epileptic encephalopathies
Symptom relief CompletedResearchers are testing an experimental drug called TAK-935 in adults with developmental and/or epileptic encephalopathies, severe brain conditions that cause frequent seizures and developmental problems. The trial enrolls a small number of participants who continue their regular…
Phase 1/2 • Sponsor: Takeda • Aim: Symptom relief
Last updated Sep 16, 2026 00:00 UTC
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New parent support programme shows promise for families of children with complex needs
Symptom relief CompletedThis pilot study tested a community-based group programme called 'Encompass' for parents of children under 5 with complex neurodisability. Fifteen parents in East London attended ten group sessions over six months. The study aimed to see if the programme was feasible and acceptab…
Sponsor: City, University of London • Aim: Symptom relief
Last updated Jun 27, 2026 12:05 UTC