[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"sturge---weber-syndrome-sws\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:sturge---weber-syndrome-sws":28},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,46],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":19,"enrollmentInfo":20,"targetDuration":4,"studyType":23,"phases":24,"briefSummary":26,"conditions":27,"keywords":29,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":34,"lastUpdatePostDateStruct":35,"startDateStruct":38,"completionDateStruct":40,"leadSponsor":42,"locationsCount":45},"100652813","phase-2-epidiolex-trial-for-presymptomatic-treatment-of-sturge-weber-syndrome-100652813",false,"NCT07778810","Epidiolex Trial for Presymptomatic Treatment of Sturge-Weber Syndrome","Epidiolex Pilot Trial for Presymptomatic Treatment of Sturge-Weber Syndrome","Epi-Pre","Inclusion Criteria:\n\n* Clinical diagnosis of Sturge-Weber Syndrome.\n* Age 1 to 18 months of age, inclusive.\n* Neuroimaging demonstrating involvement of 3 or more lobes, or bilateral involvement.\n* No history of seizures.\n* Patient's parent or legal guardian provides written informed consent prior to treatment initiation.\n\nExclusion Criteria:\n\nAny severe and\u002For uncontrolled medical conditions at randomization including, but not limited to the following:\n\n* Liver disease such as cirrhosis, decompensated liver disease, and chronic hepatitis (i.e. quantifiable HBVDNA and\u002For positive HbsAg, quantifiable HCV-RNA). Specifically the patient should not have either AST or ALT more than 1.5 times the upper limit of normal. The Child- Pugh Score must be A (mild) which is a score of 5-6 (minimum\u002Fnormal score=5). Child-Turcotte-Pugh (CTP) Calculator - Clinical Calculators - Hepatitis C Online (uw.edu)\n* Uncontrolled diabetes as defined by fasting serum glucose \\> 1.5 ULN\n* Active (acute or chronic) or uncontrolled severe infections\n* Active, bleeding diathesis\n\n  * Any other neurological diagnosis that increases the risk of seizure or neurodevelopmental disability.\n  * Patients who have had a major surgery or significant traumatic injury within 4 weeks of study entry, patients who have not recovered from the side effects of any major surgery (defined as requiring general anesthesia), or patients that may require major surgery during the course of the study.\n  * Prior treatment with any investigational drug or use of any other cannabis product within the preceding 4 weeks prior to study entry.\n  * Use of aspirin.\n  * Allergic reaction\u002Fhypersensitivity to Epidiolex or other forms of cannabidiol.\n  * Concern for non-compliance to medical regimens, or concern that the patient will not be able to complete the entire study, whether due to reliability or logistical barriers. This includes those in foster care, or those unable to keep follow-up appointments, maintain close contact with Principal Investigator, or complete all necessary studies to maintain safety.\n  * Use of any seizure medication (whether for seizures or any other reason) (e.g. valproate, clobazam).\n  * Use of chronic medications other than a multi-vitamin and\u002For vitamin D supplements.","ALL","1 Month","18 Months",{"count":21,"type":22},10,"ESTIMATED","INTERVENTIONAL",[25],"PHASE2","Patients with Sturge-Weber syndrome (SWS) are frequently affected by seizures, and seizures are associated with poorer neurological outcomes. To date there is no established means of predicting or preventing seizure onset. Cannabidiol (Epidiolex) was well tolerated in an open label study in this population. This trial will evaluate whether Epidiolex in presymptomatic Sturge-Weber patients may delay the onset of seizures and improve neurological outcome.",[28],"Sturge - Weber Syndrome (SWS)",[30,31,32],"Presymptomatic","Open-label","Cannabidiol","NOT_YET_RECRUITING","2026-08-20",{"date":36,"type":37},"2026-08-21","ACTUAL",{"date":39,"type":22},"2026-08",{"date":41,"type":22},"2028-07",{"name":43,"class":44},"Johns Hopkins University","OTHER",1,{"id":47,"slug":48,"hasResults":11,"nctId":49,"briefTitle":50,"officialTitle":51,"acronym":52,"eligibilityCriteria":53,"healthyVolunteers":11,"sex":17,"minAge":54,"maxAge":4,"enrollmentInfo":55,"targetDuration":4,"studyType":57,"phases":4,"briefSummary":58,"conditions":59,"keywords":4,"overallStatus":60,"whyStopped":4,"lastUpdateSubmitDate":61,"lastUpdatePostDateStruct":62,"startDateStruct":64,"completionDateStruct":66,"leadSponsor":68,"locationsCount":45},"100641917","developing-a-tailored-neuropsychological-rehabilitation-for-sturge-weber-syndrome-100641917","NCT07655492","Developing a Tailored Neuropsychological Rehabilitation for Sturge-Weber Syndrome","Exploring the Neuropsychological Profile of Sturge-Weber Syndrome for Developing Tailored Rehabilitation.","NPS-SWS","Inclusion Criteria:\n\n* Confirmed diagnosis of Sturge-Weber Syndrome (SWS) of any type (Type I, Type II, or Type III) based on clinical and\u002For neuroimaging findings\n* Age 2 years or older at the time of enrollment (children, adolescents, and adults are eligible)\n* Ability to cooperate with neuropsychological testing procedures\n* Willingness to complete all study assessments within the designated timeframe\n\nExclusion Criteria:\n\n* Absence of confirmed Sturge-Weber Syndrome (SWS)\n* Age younger than 2 years at the time of enrollment\n* Inability to cooperate with neuropsychological testing procedures even with accommodations or modifications","2 Years",{"count":56,"type":22},40,"OBSERVATIONAL","The goal of this observational study is to learn about the neuropsychological profile of Sturge-Weber Syndrome (SWS) in children and adults with this rare neurocutaneous condition. SWS affects approximately 1 in 50,000 live births and is characterized by brain blood vessel malformations, facial port-wine stains, and abnormal vascularization in the brain, skin, and eyes. Patients are at high risk for epileptic seizures, stroke-like episodes, glaucoma, and motor and cognitive difficulties. The main questions it aims to answer are:\n\n* What are the specific cognitive strengths and weaknesses in visuospatial abilities, working memory, and executive functions in individuals with SWS?\n* What is the detailed neuropsychological profile of patients with SWS who do not have intellectual disability?\n* Are there different cognitive-behavioral phenotypes between patients with and without the characteristic facial port-wine stain (PWS)?\n* How do clinical variables such as seizure history and brain involvement patterns relate to specific cognitive deficits?\n\nParticipants will undergo a comprehensive neuropsychological assessment battery that includes:\n\n* Intellectual functioning tests (K-BIT2) to measure verbal and non-verbal intelligence\n* Executive function evaluation (BRIEF2) assessing behavioral regulation, emotional regulation, and cognitive regulation\n* Language assessment including receptive vocabulary (PPVT) and grammatical comprehension (TCGB-2)\n* Visuospatial skills testing (Beery-Buktenica VMI) evaluating visual-motor integration\n* Working memory assessment (WISC-IV\u002FWAIS-IV digit span and spatial span subtests)\n* Learning abilities evaluation including reading (Battery for the Assessment of - Developmental Dyslexia and Dysorthography), writing, and mathematical skills (ABCA test)\n* Additional assessments for attention, verbal memory, and spatial memory as needed\n\nThe study will recruit SWS patients through collaboration with patient associations and Telethon support. Participants will continue their standard medical care throughout the study, and all medications and therapies will be recorded. The neuropsychological testing will be conducted at IRCCS San Raffaele and Sapienza University Department of Psychology.\n\nThe study aims to identify a cognitive-behavioral phenotype for SWS, develop evidence-based guidelines for neuropsychological monitoring, create personalized recommendations for educational adaptations, produce training materials for healthcare professionals and educators, and establish a multidisciplinary framework for supporting individuals with SWS. This research addresses a critical knowledge gap, as previous studies have focused mainly on general intellectual functioning and the prevalence of intellectual disability and language disorders, without providing detailed neuropsychological profiles, particularly for patients without intellectual disability.",[28],"RECRUITING","2026-06-15",{"date":63,"type":37},"2026-06-17",{"date":65,"type":22},"2026-06-10",{"date":67,"type":22},"2026-11-01",{"name":69,"class":44},"University of Roma La Sapienza"]