Clinical trials: Epilepsy Syndrome
Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia
Palliative Care Needs of Children With Rare Diseases and Their Families
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making.
- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome
- Trial name
- FACE-Rare (NCT06938542)
- Testing
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Where
- United States
- Volunteers
- 480 people, healthy volunteers welcome
- Sponsor
- Children's National Research Institute
Dentatorubral-Pallidoluysian Atrophy
Dentatorubral-pallidoluysian Atrophy Natural History and Biomarkers Study
DRPLA Natural History and Biomarkers Study (DRPLA NHBS) is a prospective observational study that will lay the foundation for clinical trials in DRPLA.
- Trial name
- DRPLA NHBS (NCT06273150)
- Testing
- Positive genetic test for pathological expansion in ATN1
- Where
- 3 sites in United States, United Kingdom
- Volunteers
- 225 people, healthy volunteers welcome
- Sponsor
- University College, London
Tuberous Sclerosis Complex, Epilepsy
Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study
This trial is a Phase II randomized, double-blind, placebo controlled multi-site study to evaluate the safety and efficacy of early sirolimus to prevent or delay seizure onset in TSC infants.
- Trial name
- TSC-STEPS (NCT05104983)
- Testing
- Sirolimus
- Where
- 8 sites in United States
- Volunteers
- 64 people
- Sponsor
- Darcy Krueger
Developmental and Epileptic Encephalopathy
A Study to Investigate LP352 in Children and Adults With Developmental and Epileptic Encephalopathies (DEE)
This (DEEp OCEAN Study) is a double-blind, randomized, placebo-controlled, multicenter study to investigate the efficacy, safety, and tolerability of LP352 in the treatment of seizures in children and adults with DEE.
- Trial name
- NCT06719141
- Testing
- LP352
- Where
- 116 sites in United States, Australia and 15 more
- Volunteers
- 367 people
- Sponsor
- Longboard Pharmaceuticals
Intellectual Disability, Cerebral Palsy
Oral Health Promotion Among Preschool Children With Special Needs
Establishing good oral health-related habit is challenging among younger children, especially for preschool children with special needs, as they have physical, mental, sensory, behavioural, emotional, and chronic medical…
- Conditions
- Intellectual Disability, Cerebral Palsy, Developmental Disorders, Developmental Delay
- Trial name
- NCT03522337
- Testing
- Visual pedagogy (social stories), Conventional leaflets
- Where
- China
- Volunteers
- 306 people
- Sponsor
- The University of Hong Kong
Developmental and Epileptic Encephalopathy, Dravet Syndrome
Open-label, Long-term Safety Study of LP352 in Subjects With Developmental and Epileptic Encephalopathy
The objective of this study is to assess the long-term safety, tolerability, and efficacy of adjunctive therapy of LP352 in subjects with developmental and epileptic encephalopathies who completed participation in Study LP352-201.
- Conditions
- Developmental and Epileptic Encephalopathy, Dravet Syndrome, Lennox-Gastaut Syndrome
- Trial name
- NCT05626634
- Testing
- LP352, bexicaserin
- Where
- 28 sites in United States, Australia
- Volunteers
- 41 people
- Sponsor
- Longboard Pharmaceuticals
Epilepsy, Tuberous Sclerosis Complex
Everolimus (RAD001) Therapy for Epilepsy in Patients With Tuberous Sclerosis Complex (TSC)
The goal of this study is to learn if the study drug RAD001 can reduced the number of epileptic seizures, and can be taken safety by people who have epilepsy associated with Tuberous Sclerosis Complex.
- Trial name
- NCT01070316
- Testing
- Everolimus
- Where
- 2 sites in United States
- Volunteers
- 20 people
- Sponsor
- Children's Hospital Medical Center, Cincinnati
Nodding Syndrome, Epilepsy
Clinical Features and Potential Etiology of Epilepsy and Nodding Syndrome in the Mahenge Area, Ulanga District
Background: Childhood epilepsy disorders are particular frequent in the area around Mahenge, southern Tanzania and recent studies have described a novel type of epilepsy with repetitive head nodding episodes and often progressive…
- Conditions
- Nodding Syndrome, Epilepsy, Onchocerciasis, Cognitive Impairment
- Trial name
- NSEC (NCT03653975)
- Testing
- no intervention
- Where
- Tanzania
- Volunteers
- 250 people, healthy volunteers welcome
- Sponsor
- Heidelberg University
Epilepsy, Temporal Lobe
Language Localization Using Repetitive Transcranial Magnetic Stimulation (rTMS) in Patients With Epilepsy
Repetitive transcranial magnetic stimulation (rTMS) may be able to provide a moderately detailed localization of language functions in the brain.
- Trial name
- NCT00001672
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
Lennox Gastaut Syndrome (LGS)
EEG Dynamics in Lennox-Gastaut Syndrome Patients Undergoing Fenfluramine Treatment
This study plans to learn if certain markers found during electroencephalogram (EEG) analysis could predict fenfluramine responsiveness to give clinicians greater insight into the effectiveness of fenfluramine in people with…
- Trial name
- NCT07555171
- Testing
- fenfluramine HCl
- Where
- United States
- Volunteers
- 20 people
- Sponsor
- University of Chicago
Mitochondrial Diseases, Kearns-Sayre Syndrome
Global Registry and Natural History Study for Mitochondrial Disorders
The main goal of the project is provision of a global registry for mitochondrial disorders to harmonize previous national registries, enable world-wide participation and facilitate natural history studies, definition of outcome…
- Conditions
- Mitochondrial Diseases, Kearns-Sayre Syndrome, MIDD, SANDO
- Trial name
- GENOMIT (NCT05554835)
- Where
- 34 sites in Austria, Germany and 1 more
- Volunteers
- 6,000 people
- Sponsor
- LMU Klinikum
Cognitive Function
Fenfluramine and Cognition
In this study, the investigators will investigate the cognitive effects of fenfluramine, a drug that directly stimulates the release of serotonin in the brain and positively modulates σ1 function.
- Trial name
- FEN&Cognition (NCT05026398)
- Testing
- Fenfluramine
- Where
- United Kingdom
- Volunteers
- 56 people, healthy volunteers welcome
- Sponsor
- University of Oxford
Rolandic Epilepsy
Rolandic Epilepsy Genomewide Association International Study
We have discovered a small change in the genetic code which increases the risk of the brainwave abnormality that is found in rolandic epilepsy. We now wish to confirm this using a second much larger sample of patients.
- Trial name
- REGAIN (NCT03547050)
- Testing
- Blood draw, Existing samples
- Where
- 13 sites in United States, Argentina and 5 more
- Volunteers
- 210 people
- Sponsor
- King's College London
Childhood Absence Epilepsy, Juvenile Absence Epilepsy
Flunarizine for Treatment Resistant Absence Epilepsy
This is an open-label, single-centre study to evaluate the clinical efficacy, safety and tolerability of Flunarizine administered as adjunctive treatment in participants diagnosed with treatment resistant absence epilepsy.
- Conditions
- Childhood Absence Epilepsy, Juvenile Absence Epilepsy, Juvenile Myoclonic Epilepsy
- Trial name
- NCT06153186
- Testing
- Flunarizine Hydrochloride
- Where
- Canada
- Volunteers
- 9 people
- Sponsor
- University of British Columbia
New Onset Refractory Status Epilepticus, New-Onset Refractory Status Epilepticus
COMparison Between Anakinra and Tocilizumab in NORSE - "COMBAT-NORSE"
The goal of this clinical trial is to find out whether two existing medications-anakinra and tocilizumab-can effectively treat a rare and life-threatening brain condition called NORSE (New-Onset Refractory Status Epilepticus).
- Conditions
- New Onset Refractory Status Epilepticus, New-Onset Refractory Status Epilepticus, Febrile Infection-Related Epilepsy Syndrome (FIRES)
- Trial name
- COMBAT-NORSE (NCT07281027)
- Testing
- Anakinra, Tocilizumab, Standard medical treatment
- Where
- 33 sites in United States, Canada and 5 more
- Volunteers
- 438 people
- Sponsor
- Yale University
Benign Epilepsy With Centrotemporal Spikes
18F-FDG PET Imaging Analysis of Antiepileptic Drug Response in BECTS
This original article is a novel investigation on the metabolic characteristics of different patterns of antiepileptic drug (AED) responses in benign epilepsy with centrotemporal spikes (BECTS) patients using 18F-FDG PET imaging.
- Trial name
- NCT04357236
- Where
- China
- Volunteers
- 55 people
- Sponsor
- Second Affiliated Hospital, Zhejiang University, School of Medicine
Developmental and Epileptic Encephalopathies, Epileptic Spasms
Ketogenic Diet for Prevention of Epileptic Spasms in Infantile Onset Genetic Epilepsies
Epileptic spasms (ES) are a predominantly infantile seizure type observed frequently in certain genetic disorders. Ketogenic diet (high ratio of fat to carbohydrate/protein) is an established non-medication treatment for…
- Conditions
- Developmental and Epileptic Encephalopathies, Epileptic Spasms, Genetic Epilepsy, Neonatal and Infant Epilepsy
- Trial name
- NCT06700811
- Testing
- Ketogenic diet
- Where
- United States
- Volunteers
- 1 people
- Sponsor
- Heather Olson
Photosensitive Epilepsy
Treatment of Sunflower Syndrome With ZX008 (Fenfluramine Hydrochloride) in Children and Young Adults (Ages 4-25).
Sunflower Syndrome (also referred to as Self-induced Photosensitive Epilepsy) is a rare epileptic disorder characterized by a distinctive seizure that manifests itself in a highly stereotyped physical behavior.
- Trial name
- NCT03790137
- Testing
- Fenfluramine Hydrochloride
- Where
- United States
- Volunteers
- 20 people
- Sponsor
- Elizabeth Anne Thiele
Epilepsy, Tuberous Sclerosis Complex
A Pilot Study To Evaluate The Effects of Everolimus on Brain mTOR Activity and Cortical Hyperexcitability in TSC and FCD
The purpose of this study is to measure if the drug called Everolimus effects mTOR signaling (an electrical activity signal in the brain) in patients with Tuberous Sclerosis Complex (TSC) and Focal Cortical Dysplasia (FCD) with…
- Conditions
- Epilepsy, Tuberous Sclerosis Complex, Focal Cortical Dysplasia
- Trial name
- NCT02451696
- Testing
- Everolimus
- Where
- United States
- Volunteers
- 15 people
- Sponsor
- NYU Langone Health
Epilepsy, Temporal Lobe, Drug Resistant Epilepsy
Studying Heart Rhythms With a Wearable Sensor to Detect and Predict Seizures in People With Epilepsy
The goal of this observational study is to understand heart rhythm changes in adults with epilepsy. It will also explore whether computer programs can use heart recordings to detect or predict seizures.
- Trial name
- EpHR-DP (NCT07835594)
- Testing
- Textile-based wearable electrocardiography
- Where
- Turkey (Türkiye)
- Volunteers
- 40 people, healthy volunteers welcome
- Sponsor
- Acibadem University