Genetic developmental and epileptic encephalopathy
MONDO:0100062A complex neurodevelopmental disorder characterized by a range of developmental delays and epileptic encephalopathy phenotypes. Seizure onset is variable and intellectual disability is variable in presence and severity.
Also known as: developmental and epileptic encephalopathy, hereditary developmental and epileptic encephalopathy
93 clinical trials for this condition and its sub-types, 2 tagged with Genetic developmental and epileptic encephalopathy itself.
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Sub-types of Genetic developmental and epileptic encephalopathy
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Dravet syndrome 39 trials
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Lennox-Gastaut syndrome 26 trials · 27 incl. sub-types
3 sub-types
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Neonatal-onset developmental and epileptic encephalopathy 0 trials · 5 incl. sub-types
20 sub-types
- Developmental and epileptic encephalopathy, 13 3 trials
- Developmental and epileptic encephalopathy, 25 1 trial
- Developmental and epileptic encephalopathy, 42 1 trial
- Developmental and epileptic encephalopathy, 12 0 trials
- Developmental and epileptic encephalopathy, 16 0 trials
- Developmental and epileptic encephalopathy, 21 0 trials
- Developmental and epileptic encephalopathy, 24 0 trials
- Developmental and epileptic encephalopathy, 26 0 trials
- Developmental and epileptic encephalopathy, 28 0 trials
- Developmental and epileptic encephalopathy, 29 0 trials
- Developmental and epileptic encephalopathy, 31A 0 trials
- Developmental and epileptic encephalopathy, 32 0 trials
- Developmental and epileptic encephalopathy, 33 0 trials
- Developmental and epileptic encephalopathy, 34 0 trials
- Developmental and epileptic encephalopathy, 39 0 trials
- Developmental and epileptic encephalopathy, 41 0 trials
- Developmental and epileptic encephalopathy, 44 0 trials
- Developmental and epileptic encephalopathy, 45 0 trials
- Developmental and epileptic encephalopathy, 46 0 trials
- Developmental and epileptic encephalopathy, 47 0 trials
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2 sub-types
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New hope for infants with severe epilepsy: fenfluramine trial launches
Disease control CompletedThis phase 3 trial is testing the safety and tolerability of fenfluramine (Fintepla) in 25 infants aged 1 to 2 years with Dravet syndrome, a severe form of epilepsy. The drug is given as an oral solution twice daily alongside other seizure medications. Researchers will monitor he…
Phase 3 • Sponsor: UCB BIOSCIENCES, Inc. • Aim: Disease control
Last updated Sep 19, 2026 00:00 UTC
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Can a new drug curb seizures in children with severe epilepsy?
Disease control CompletedResearchers are testing an experimental drug called TAK-935 in children aged 2 to 17 with Dravet syndrome or Lennox-Gastaut syndrome, two severe forms of epilepsy that often resist treatment. The trial compares TAK-935 added to standard anti-seizure medications against a placebo …
Phase 2 • Sponsor: Takeda • Aim: Disease control
Last updated Sep 16, 2026 00:00 UTC
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Can a new Add-On drug tame seizures in dravet syndrome?
Disease control CompletedThis phase 3 trial tests whether soticlestat, an experimental oral drug, can reduce convulsive seizures in children and young adults with Dravet syndrome, a severe form of epilepsy. Participants continue their standard antiseizure therapy and also receive either soticlestat or a …
Phase 3 • Sponsor: Takeda • Aim: Disease control
Last updated Sep 06, 2026 00:00 UTC
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Can a High-Fat diet and therapy tame seizures in rare childhood epilepsy?
Disease control CompletedThis study asks whether adding a medically supervised ketogenic diet to occupational therapy can help children aged 4 to 7 with ARX gene mutations and drug-resistant epilepsy. Twenty children will take part: half follow the ketogenic diet while the other half do not, and both gro…
Sponsor: Uskudar University • Aim: Disease control
Last updated Aug 09, 2026 00:00 UTC
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Could a common mineral ease rare genetic disorder? zinc trial shows promise
Disease control CompletedThis pilot trial tested whether taking oral zinc every day for 6 months is safe and doable for people with GNAO1 disorders, a rare genetic condition that causes movement problems, seizures, and developmental delays. 13 participants aged 6 months to 30 years took zinc acetate. The…
Phase 2 • Sponsor: Children's University Hospital Cologne, Germany • Aim: Disease control
Last updated Jun 27, 2026 09:01 UTC
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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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Can a daily tablet quiet the seizures of two devastating genetic disorders?
Symptom relief CompletedResearchers are testing an experimental drug called soticlestat in people with two rare genetic conditions: Dup15q syndrome and CDKL5 deficiency disorder. Both conditions cause frequent motor seizures that are hard to control. The trial enrolls about 20 participants who take one …
Phase 2 • Sponsor: Takeda • Aim: Symptom relief
Last updated Sep 12, 2026 00:00 UTC
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Can an experimental drug cut drop seizures in a severe childhood epilepsy?
Symptom relief CompletedResearchers are testing whether soticlestat, an experimental drug, can reduce major drop seizures when added to standard antiseizure therapy in children, teenagers, and adults with Lennox-Gastaut syndrome. About 270 participants will take either soticlestat or a placebo for 16 we…
Phase 3 • Sponsor: Takeda • Aim: Symptom relief
Last updated Sep 12, 2026 00:00 UTC
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Virtual therapy helps kids with rare epilepsy gain daily living skills
Symptom relief CompletedThis study tested whether remote occupational therapy could help children and teens (ages 7-18) with Dravet syndrome improve their daily living skills and satisfaction. 14 families participated in online sessions where a therapist coached the child or parent. The goal was to see …
Sponsor: Fondazione Policlinico Universitario Agostino Gemelli IRCCS • Aim: Symptom relief
Last updated Jun 27, 2026 12:34 UTC
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Warm baths tested as seizure treatment for rare childhood disorder
Symptom relief CompletedThis study tested whether daily 20-minute warm baths could safely reduce seizures in 8 children (ages 6 months to 6 years) with CDKL5 deficiency, a rare genetic disorder causing hard-to-control seizures. The treatment was added to their usual medications for 12 weeks. The goal wa…
Sponsor: Xuanwu Hospital, Beijing • Aim: Symptom relief
Last updated Jun 27, 2026 12:08 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
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How many people live with rare epilepsies in spain? a nationwide count aims to find out
Knowledge-focused CompletedThis study looks at medical records from public hospitals in Spain to count how many children, teenagers, and adults have Dravet syndrome or Lennox-Gastaut syndrome, and how many new cases are diagnosed each year. It is an observational study, meaning no treatment or intervention…
Sponsor: Takeda • Aim: Knowledge-focused
Last updated Aug 20, 2026 00:00 UTC
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Walking analysis sheds light on rare genetic disorders
Knowledge-focused CompletedThis study looked at whether a special walking test (3D gait analysis) can help identify movement problems in people with rare genetic diseases like Tuberous Sclerosis and STXBP1. About 40 participants aged 6 and older who could walk without help took part. The goal was to see if…
Sponsor: Universiteit Antwerpen • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:31 UTC
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Fever's impact on seizures in rare genetic disorder revealed
Knowledge-focused CompletedThis study looked at how fever changes seizure patterns in people with CDKL5 deficiency disorder, a rare genetic condition that causes hard-to-control seizures. Researchers surveyed parents of 131 affected individuals to collect information on fever history and seizure frequency.…
Sponsor: Xuanwu Hospital, Beijing • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:08 UTC
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Liquid vs. pill: new study tests easier way to take seizure drug
Knowledge-focused CompletedThis study tested two versions of the seizure medication stiripentol (Diacomit®) in 24 healthy adults: a capsule and a liquid suspension. The goal was to see if the liquid form is absorbed by the body in a similar way to the capsule. If so, it could provide a more convenient opti…
Phase 1 • Sponsor: Biocodex • Aim: Knowledge-focused
Last updated Jun 26, 2026 18:16 UTC