[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100558860":3},{"organization":4,"outcomesModule":7,"designInfo":14,"detailedDescription":13,"studyPopulation":16,"armGroups":13,"interventions":17,"overallOfficials":13,"centralContacts":22,"locations":32,"responsibleParty":50,"collaborators":13,"id":52,"slug":13,"hasResults":53,"nctId":54,"briefTitle":55,"officialTitle":56,"acronym":57,"eligibilityCriteria":58,"healthyVolunteers":53,"sex":59,"minAge":60,"maxAge":13,"enrollmentInfo":61,"targetDuration":13,"studyType":64,"phases":13,"briefSummary":65,"conditions":66,"keywords":13,"overallStatus":35,"whyStopped":13,"lastUpdateSubmitDate":68,"lastUpdatePostDateStruct":69,"startDateStruct":72,"completionDateStruct":74,"leadSponsor":76,"locationsCount":77},{"fullName":5,"class":6},"University Children's Hospital, Zurich","OTHER",{"primaryOutcomes":8,"secondaryOutcomes":13,"otherOutcomes":13},[9],{"measure":10,"description":11,"timeFrame":12},"HrQol","Hrqol","through study completion, an average of 6 months",null,{"allocation":13,"interventionModel":13,"interventionModelDescription":13,"primaryPurpose":13,"observationalModel":6,"timePerspective":15,"maskingInfo":13},"PROSPECTIVE","Patients with CBS deficiency from age 8 years\n\n* Parents of patient(s) \\\u003C 18 years with cognitive impairment\n* Parents of patients between age 4 and 7\n* Experts on CBS deficiency",[18],{"type":19,"name":20,"description":21,"armGroupLabels":13,"otherNames":13},"BEHAVIORAL","Interview","Interviews, presentation of questionnaires",[23,29],{"name":24,"role":25,"phone":26,"phoneExt":27,"email":28},"Helene Werner, PD, Dr","CONTACT","004144266","0","helene.werner@kispi.uzh.ch",{"name":30,"role":25,"phone":26,"phoneExt":27,"email":31},"Martina Huemer, Prof","martina.huemer@kispi.uzh.ch",[33],{"facility":34,"status":35,"city":36,"state":13,"zip":37,"country":38,"countryCode":39,"cosmosGeoPoint":40,"geoPoint":45,"contacts":46},"Kinderspital Zürich","RECRUITING","Zurich","8008","Switzerland","CH",{"type":41,"coordinates":42},"Point",[43,44],8.55,47.36667,{"lat":44,"lon":43},[47],{"name":48,"role":25,"phone":49,"phoneExt":13,"email":28},"Helene Werner, PhD","+41442490",{"type":51,"investigatorFullName":13,"investigatorTitle":13,"investigatorAffiliation":13,"oldNameTitle":13,"oldOrganization":13},"SPONSOR","100558860",false,"NCT06556615","Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)","Development and Validation of a Standardized Assessment Instrument for Health-related Quality of Life (HrQoL) in Patients With Classical Homocystinuria","CBS_HrQoL","Inclusion criteria\n\n* Patients with CBS deficiency from age 8 years\n* Parents of patient(s) \\\u003C 18 years with cognitive impairment\n* Parents of patients between age 4 and 7\n* Experts on CBS deficiency\n* Able to give informed consent as documented by signature\n\nExclusion criteria\n\n\\- Sufficient command of the German or the English language","ALL","8 Years",{"count":62,"type":63},80,"ESTIMATED","OBSERVATIONAL","Patients, parents of young \u002F handicapped patients, and experts will be interviewed to collect contents relevant for HrQoL in CBS deficiency. Based on these data, a questionnaire will be developed and tested for comprehensibility in patients and parents of young \u002F handicapped patients. A final questionnaire version will be tested for psychometric criteria including validity and reliability.",[67],"Homocystinuria","2025-04-09",{"date":70,"type":71},"2025-04-10","ACTUAL",{"date":73,"type":71},"2025-01-15",{"date":75,"type":63},"2025-09",{"name":5,"class":6},1]