[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"dee\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:dee":24},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,1,0,[8],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":4,"eligibilityCriteria":14,"healthyVolunteers":11,"sex":15,"minAge":4,"maxAge":4,"enrollmentInfo":16,"targetDuration":19,"studyType":20,"phases":4,"briefSummary":21,"conditions":22,"keywords":25,"overallStatus":28,"whyStopped":4,"lastUpdateSubmitDate":29,"lastUpdatePostDateStruct":30,"startDateStruct":33,"completionDateStruct":35,"leadSponsor":37,"locationsCount":5},"100624713","genetic-developmental-and-epileptic-encephalopathy-natural-history-study-for-clinical-trial-readiness-100624713",false,"NCT07413211","Genetic Developmental and Epileptic Encephalopathy Natural History Study for Clinical Trial Readiness","Inclusion Criteria\n\n* Molecular diagnosis of a genetic disorder associated with DEE, as confirmed by the study investigators\n* A neurological phenotype such as epilepsy or developmental delay as confirmed by the study investigators.\n* English Speaking (Arms 1, 2, 4, 5). The registries may be completed by people who speak any language.\n\nARM 1 (In person cohort)\n\n* MEF2C\n* Age 0 to 15 at the time of study enrollment.\n* Willingness to travel to New York City four times over two years\n\nARM 2 (Virtual cohort)\n\n* MEF2C\n* Any age at the time of study enrollment\n* Sufficient internet connectivity to support video teleconferencing\n* Commitment to fill out all survey instruments\n\nARM 3 (Registry)\n\n* MEF2C\n* Any age at the time of study enrollment\n* Commitment to fill out one on-line instrument\n\nARM 4 (In person cohort)\n\n* Any DEE\n* Any age at the time of study enrollment\n* Willingness to travel to New York City four times over two years\n\nARM 5 (Virtual cohort)\n\n* Any DEE\n* Any age at the time of study enrollment\n* Sufficient internet connectivity to support video teleconferencing\n* Commitment to fill out all survey instruments\n\nARM 6 (Registry)\n\n* Any DEE\n* Any age at the time of study enrollment\n* Commitment to fill out one on-line instrument\n\nExclusion Criteria\n\n* Presence of a significant non-DEE-related central nervous impairment\u002Fbehavioral disturbance that would confound the scientific rigor or interpretation of results of the study\n* History of prematurity (defined as gestational age \\\u003C35 weeks), interventricular hemorrhage, structural brain deficit, or congenital heart disease\n* Presence of a clinical comorbidity deemed by the investigator to potentially confound the typical presentation of DEE","ALL",{"count":17,"type":18},22068,"ESTIMATED","10 Years","OBSERVATIONAL","Phase 0 non-interventional longitudinal study of children and adults with Developmental and Epileptic Encephalopathy (DEE) due to a genetic cause. There are six arms of the study. Arms 1, 2, and 3 are devoted to one example DEE, MEF2C Haploinsufficiency Syndrome (MCHS). Arms 4, 5, and 6 are open to all DEE. Arm 1 (in-person) will enroll children 0 to 15, who will make in-person visits to Weill Cornell Medicine four times over two years. Arm 2 (virtual) will enroll people of all ages and older who will make virtual visits over Weill Cornell Zoom to Weill Cornell Medicine over two years (2 if 16 and older; 4 if 0 to 15). Arm 3 (registry) will enroll people of all ages in an online-only survey. Arms 4 - 6 mirror this structure but they are open to all children with DEE. Arm 4 (in-person) will enroll children of any age, who will make in-person visits every 6 months for 10 years. Arm 5 (virtual) will enroll children of any age for virtual visits, twice a year of 0 to 15, once a year if 16 or older. Arm 6 (registry) will enroll people of all ages in an online only survey.",[23,24],"MEF2C","DEE",[26,27],"MEF2C Haploinsufficiency Syndrome (MCHS)","Developmental and Epileptic Encephalopathy","RECRUITING","2026-02-09",{"date":31,"type":32},"2026-02-17","ACTUAL",{"date":34,"type":32},"2025-02-26",{"date":36,"type":18},"2037-04-30",{"name":38,"class":39},"Weill Medical College of Cornell University","OTHER"]