Developmental and epileptic encephalopathy

This 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 …

This 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…

This 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…

This 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…

This 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…

This study tested a drug called NBI-827104 in 24 children with a rare epilepsy that causes constant brain spikes during sleep. The drug is a calcium channel blocker given daily for 13 weeks. The main goal was to see if it reduces abnormal brain activity measured by EEG.

This 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…

This study tested whether a powerful genetic test called exome sequencing can find the cause of severe epilepsy in children when standard tests fail. Researchers studied 15 children with epileptic encephalopathy of unknown genetic origin. The goal was to see if this test could im…

This 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 …

This 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…

This 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…

This study tested whether baby SPA (hydrotherapy) and massage can reduce colic symptoms in infants. 72 babies aged 40 days to 4 months with diagnosed colic were enrolled. The intervention involved weekly SPA and massage sessions for four weeks, with symptoms tracked using a colic…

This 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…

This 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…

This 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.…

This 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…