Neonatal/infantile-onset epilepsy syndrome with developmental and epileptic encephalopathy
MONDO:0800490A neonatal/infantile epilepsy syndrome characterized by the onset of non-self-limiting seizures and developmental regression or delay in infants/neonates. This condition is typically caused by genetic mutations that disrupt normal brain development, affecting both cognitive and motor development that is not responsive to typical seizure treatments.
Also known as: NIE-SDE
62 clinical trials for this condition and its sub-types, 0 tagged with Neonatal/infantile-onset epilepsy syndrome with developmental and epileptic encephalopathy itself.
Follow this condition to get notified about new trialsWhere it sits in the disease tree
Browse by category →Sub-types of Neonatal/infantile-onset epilepsy syndrome with developmental and epileptic encephalopathy
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Dravet syndrome 39 trials
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Infantile spasms 8 trials · 19 incl. sub-types
8 sub-types
- Developmental and epileptic encephalopathy, 2 10 trials
- Developmental and epileptic encephalopathy, 1 2 trials
- Developmental and epileptic encephalopathy, 12 0 trials
- Developmental and epileptic encephalopathy, 15 0 trials
- Developmental and epileptic encephalopathy, 27 0 trials
- Developmental and epileptic encephalopathy, 30 0 trials
- Developmental and epileptic encephalopathy, 40 0 trials
- Developmental and epileptic encephalopathy, 5 0 trials
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Early-infantile DEE 2 trials
3 sub-types
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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 4 • Sponsor: Elizabeth Donner • Aim: Disease control
Last updated Sep 13, 2026 00:00 UTC
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New drug trial aims to tame seizures in rare childhood disorder
Disease control Not yet recruitingThis study tests whether the drug ganaxolone can reduce seizures in children aged 6 months to 2 years with CDKL5 deficiency disorder, a rare genetic condition causing hard-to-control seizures. Twenty children will receive either ganaxolone or a placebo alongside their usual seizu…
Phase 3 • Sponsor: Immedica Pharma AB • Aim: Disease control
Last updated Aug 07, 2026 00:00 UTC
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Hot baths tested as seizure treatment for rare childhood disorder
Symptom relief Not yet recruitingThis study tests whether taking a daily hot bath (40-42°C for 20 minutes) at home can reduce epileptic seizures in children with CDKL5 deficiency disorder. The trial will include 34 children aged 6 months to 14 years whose seizures are not controlled by medication. Researchers wi…
Sponsor: Xuanwu Hospital, Beijing • Aim: Symptom relief
Last updated Jun 27, 2026 12:36 UTC
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Blood markers may expose hidden brain changes in dravet syndrome
Knowledge-focused Not yet recruitingResearchers are testing whether blood samples can reveal brain damage and inflammation in people with Dravet syndrome, a severe form of epilepsy that also affects development. The study compares blood markers from 60 people with Dravet syndrome to 30 healthy controls, and follows…
Sponsor: Fondazione Policlinico Universitario Agostino Gemelli IRCCS • Aim: Knowledge-focused
Last updated Sep 05, 2026 00:00 UTC
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Do brain monitors fool seizure kids? study aims to find out
Knowledge-focused Not yet recruitingThis study will check if two common brain monitors used during anesthesia (BIS and Sedline) give accurate readings in children with severe seizure disorders. Researchers will compare these monitors to a standard EEG in 40 children under 16. The goal is to make anesthesia safer fo…
Sponsor: Telethon Kids Institute • Aim: Knowledge-focused
Last updated Jul 19, 2026 00:00 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 …
Sponsor: Byteflies • Aim: Knowledge-focused
Last updated Jun 27, 2026 07:56 UTC