[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100555854":3},{"organization":4,"armGroups":7,"interventions":14,"overallOfficials":19,"centralContacts":23,"locations":28,"responsibleParty":45,"collaborators":48,"id":54,"slug":55,"hasResults":56,"nctId":57,"briefTitle":58,"officialTitle":58,"acronym":10,"eligibilityCriteria":59,"healthyVolunteers":56,"sex":60,"minAge":10,"maxAge":10,"enrollmentInfo":61,"targetDuration":10,"studyType":64,"phases":10,"briefSummary":65,"conditions":66,"keywords":68,"overallStatus":31,"whyStopped":10,"lastUpdateSubmitDate":73,"lastUpdatePostDateStruct":74,"startDateStruct":77,"completionDateStruct":79,"leadSponsor":81,"locationsCount":82},{"fullName":5,"class":6},"Xi'an Jiaotong University","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Patients With Facioscapulohumeral Muscular Dystrophy",null,"No intervention will be administered",[13],"Other: No Intervention",[15],{"type":6,"name":16,"description":17,"armGroupLabels":18,"otherNames":10},"No Intervention","No Intervention will be conducted",[9],[20],{"name":21,"affiliation":5,"role":22},"Wenjing Ji, PhD","PRINCIPAL_INVESTIGATOR",[24],{"name":21,"role":25,"phone":26,"phoneExt":10,"email":27},"CONTACT","+86 18221252258","yfyx_8312@163.com",[29],{"facility":30,"status":31,"city":32,"state":33,"zip":34,"country":35,"countryCode":36,"cosmosGeoPoint":37,"geoPoint":42,"contacts":43},"Health Science Center of Xi'an Jiaotong University","RECRUITING","Xi'an","Shaanxi","710049","China","CN",{"type":38,"coordinates":39},"Point",[40,41],108.92861,34.25833,{"lat":41,"lon":40},[44],{"name":21,"role":25,"phone":26,"phoneExt":10,"email":27},{"type":22,"investigatorFullName":46,"investigatorTitle":47,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Wenjing Ji","Associate Professor",[49,52],{"name":50,"class":51},"Chinese Organization for Rare Disorders","UNKNOWN",{"name":53,"class":6},"First Affiliated Hospital of Fujian Medical University","100555854","disease-burden-and-living-situation-of-patients-with-facioscapulohumeral-muscular-dystrophy-100555854",false,"NCT06517498","Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy","Inclusion Criteria:\n\n* Having been diagnosed as Facioscapulohumeral Muscular Dystrophy\n\nExclusion Criteria:\n\n* No","ALL",{"count":62,"type":63},300,"ESTIMATED","OBSERVATIONAL","The goal of this observational study is to learn the patient journey, disease burden, living situation, quality of life and etc. in patients with Facioscapulohumeral Muscular Dystrophy in all sex\u002Fgender and age groups. The main questions it aims to answer are:\n\n1. What's the patient journey of patients with Facioscapulohumeral Muscular Dystrophy?\n2. How does Facioscapulohumeral Muscular Dystrophy burden the patients?\n3. How's the quality of life of patients with Facioscapulohumeral Muscular Dystrophy?\n\nPatients with Facioscapulohumeral Muscular Dystrophy will be asked to:\n\n1. fill a questionnaire.\n2. be interviewed and answer questions about their illness experience, economic burden, quality of life and etc.\n\nMedical experts on Facioscapulohumeral Muscular Dystrophy will be asked to be interviewed and answer questions about understanding on the disease and the patients.",[67],"Muscular Dystrophy, Facioscapulohumeral",[69,70,71,72],"Facioscapulohumeral Muscular Dystrophy","Disease Burden","Quality of Life","Living Situation","2024-07-18",{"date":75,"type":76},"2024-07-24","ACTUAL",{"date":78,"type":76},"2024-03-01",{"date":80,"type":63},"2025-07",{"name":5,"class":6},1]