[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100581020":3},{"organization":4,"armGroups":7,"interventions":7,"overallOfficials":8,"centralContacts":12,"locations":20,"responsibleParty":37,"collaborators":40,"id":45,"slug":46,"hasResults":47,"nctId":48,"briefTitle":49,"officialTitle":49,"acronym":7,"eligibilityCriteria":50,"healthyVolunteers":47,"sex":51,"minAge":7,"maxAge":7,"enrollmentInfo":52,"targetDuration":55,"studyType":56,"phases":7,"briefSummary":57,"conditions":58,"keywords":7,"overallStatus":22,"whyStopped":7,"lastUpdateSubmitDate":60,"lastUpdatePostDateStruct":61,"startDateStruct":64,"completionDateStruct":66,"leadSponsor":68,"locationsCount":69},{"fullName":5,"class":6},"IRCCS Fondazione Stella Maris","OTHER",null,[9],{"name":10,"affiliation":5,"role":11},"Filippo M Santorelli, Dr.","PRINCIPAL_INVESTIGATOR",[13,17],{"name":10,"role":14,"phone":15,"phoneExt":7,"email":16},"CONTACT","+39 050886275","filippo.santorelli@fsm.unipi.it",{"name":18,"role":14,"phone":7,"phoneExt":7,"email":19},"Stefania Della Vecchia, Dr.","stefania.dellavecchia@fsm.unipi.it",[21],{"facility":5,"status":22,"city":23,"state":7,"zip":24,"country":25,"countryCode":26,"cosmosGeoPoint":27,"geoPoint":32,"contacts":33},"RECRUITING","Pisa","56128","Italy","IT",{"type":28,"coordinates":29},"Point",[30,31],10.4036,43.70853,{"lat":31,"lon":30},[34,35,36],{"name":10,"role":14,"phone":7,"phoneExt":15,"email":16},{"name":18,"role":14,"phone":7,"phoneExt":7,"email":19},{"name":10,"role":11,"phone":7,"phoneExt":7,"email":7},{"type":11,"investigatorFullName":38,"investigatorTitle":39,"investigatorAffiliation":5,"oldNameTitle":7,"oldOrganization":7},"Filippo Maria Santorelli","Director of Molecular Medicine",[41,43],{"name":42,"class":6},"Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta",{"name":44,"class":6},"Bambino Gesù Hospital and Research Institute","100581020","italian-ncl-registry-a-registry-for-ncl-as-an-integration-tool-for-future-therapeutic-strategies-100581020",false,"NCT06844877","Italian NCL Registry: a Registry for NCL as an Integration Tool for Future Therapeutic Strategies","Inclusion Criteria:\n\n* genetically confirmed diagnosis of neuronal ceroid lipofuscinosis\n* participants\u002Fparents\u002Flegal guardians will have to give informed consent for enrollment in the registry and privacy data management\n\nExclusion Criteria:\n\n* subjects affected by other forms of neurodegenerative diseases.\n* lack of informed consent","ALL",{"count":53,"type":54},50,"ESTIMATED","10 Years","OBSERVATIONAL","The goal is to create a solid and harmonious disease registry of patient affected by neuronal ceroid lipofuscinosis (NCLs) that facilitates the collection and management of patients' data over time encouraging the research and the development of future clinical trials. In-depth clinical phenotyping will develop significant clinical outcome measures that can be used in clinical trials and will allow the phenotypic complexity of the disease to be captured with the use of validated clinical scales, biomarkers and so-called patient reported outcomes (PROs).",[59],"Neuronal Ceroid Lipofuscinosis","2026-03-23",{"date":62,"type":63},"2026-03-27","ACTUAL",{"date":65,"type":63},"2024-07-19",{"date":67,"type":54},"2027-07-19",{"name":5,"class":6},1]