[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100620356":3},{"organization":4,"armGroups":7,"interventions":15,"overallOfficials":24,"centralContacts":31,"locations":42,"responsibleParty":61,"collaborators":63,"id":66,"slug":10,"hasResults":67,"nctId":68,"briefTitle":69,"officialTitle":69,"acronym":70,"eligibilityCriteria":71,"healthyVolunteers":67,"sex":72,"minAge":73,"maxAge":74,"enrollmentInfo":75,"targetDuration":10,"studyType":78,"phases":10,"briefSummary":79,"conditions":80,"keywords":82,"overallStatus":45,"whyStopped":10,"lastUpdateSubmitDate":87,"lastUpdatePostDateStruct":88,"startDateStruct":91,"completionDateStruct":93,"leadSponsor":95,"locationsCount":96},{"fullName":5,"class":6},"Assistance Publique - Hôpitaux de Paris","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Patients",null,"Patients, children aged at least 7 years and adolescents\u002Fyoung adults followed in the pediatric department of hereditary metabolic diseases of Necker Hospital, having specific oral drug treatment.",[13,14],"Other: Questionnaire","Other: Calculation of the metabolic balance score",[16,20],{"type":6,"name":17,"description":18,"armGroupLabels":19,"otherNames":10},"Questionnaire","A pseudonymized questionnaire assessing treatment adherence, understanding of the illness, knowledge of medications, and the number of oral medications taken is given to patients and\u002For their parents during a follow-up visit, whether in a consultation, day hospital, or conventional hospitalization. It is completed by parents and children aged 7 and older, as well as by adolescents and young adults. The responses will not be disclosed to the physicians in the department.",[9],{"type":6,"name":21,"description":22,"armGroupLabels":23,"otherNames":10},"Calculation of the metabolic balance score","For patients with urea cycle deficiency, a metabolic balance score will be calculated independently from retrospective data from the medical record, in the last two years preceding the completion of the questionnaire.",[9],[25,28],{"name":26,"affiliation":5,"role":27},"Margaux MD GASCHIGNARD, M.D.","PRINCIPAL_INVESTIGATOR",{"name":29,"affiliation":5,"role":30},"Pascale de LONLAY, M.D., PhD","STUDY_DIRECTOR",[32,38],{"name":33,"role":34,"phone":35,"phoneExt":36,"email":37},"Margaux GASCHIGNARD, M.D.","CONTACT","01 44 49 40 23","+33","margaux.gaschignard@aphp.fr",{"name":39,"role":34,"phone":40,"phoneExt":36,"email":41},"Hélène Morel","01 71 19 63 46","helene.morel@aphp.fr",[43],{"facility":44,"status":45,"city":46,"state":10,"zip":47,"country":48,"countryCode":49,"cosmosGeoPoint":50,"geoPoint":55,"contacts":56},"Hôpital Necker-Enfants Malades","RECRUITING","Paris","75015","France","FR",{"type":51,"coordinates":52},"Point",[53,54],2.3488,48.85341,{"lat":54,"lon":53},[57,58],{"name":33,"role":34,"phone":35,"phoneExt":36,"email":37},{"name":59,"role":34,"phone":35,"phoneExt":36,"email":60},"Pascale M.D., PhD de Lonlay","pascale.delonlay@aphp.fr",{"type":62,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[64],{"name":65,"class":6},"URC-CIC Paris Descartes Necker Cochin","100620356",false,"NCT07356557","Evaluation of Therapeutic Adherence Among Patients Followed in the Department of Hereditary Metabolic Diseases at Necker Hospital","OBSERVANCE MHM","Inclusion Criteria:\n\n* All patients followed in the Hereditary Metabolic Diseases department of Necker Hospital during their visit to the department for their usual care and having a specific daily oral medication treatment.\n* Children aged at least 7 years and adolescents\u002Fyoung adults\n* Holders of parental authority and children or adolescents or adults' patients informed and consenting to participate in the study\n\nExclusion Criteria:\n\n* Metabolic disease without oral medication (intravenous treatments, amino acid mixtures, and dietary regimens are not evaluated).\n* Patient and parents not proficient in French.\n* Refusal by the patient's holders of parental authority or adult patient to participate in the study and\u002For refusal of the child\u002Fadolescent.","ALL","7 Years","20 Years",{"count":76,"type":77},200,"ESTIMATED","OBSERVATIONAL","The purpose of this study is to evaluate treatment adherence among patients followed in the Department of Inherited Metabolic Diseases at Necker Hospital, in order to assess the need for implementing a therapeutic education workshop focused on medication adherence.",[81],"Metabolic Diseases",[83,84,85,86],"Metabolic disease","Daily oral drug treatment","Medication adherence","Therapeutic education workshop","2026-06-29",{"date":89,"type":90},"2026-06-30","ACTUAL",{"date":92,"type":90},"2026-02-23",{"date":94,"type":77},"2028-02-23",{"name":5,"class":6},1]