[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100361767":3},{"organization":4,"outcomesModule":7,"designInfo":14,"detailedDescription":13,"studyPopulation":17,"armGroups":18,"interventions":24,"overallOfficials":30,"centralContacts":34,"locations":42,"responsibleParty":60,"collaborators":13,"id":62,"slug":13,"hasResults":63,"nctId":64,"briefTitle":65,"officialTitle":66,"acronym":13,"eligibilityCriteria":67,"healthyVolunteers":68,"sex":69,"minAge":70,"maxAge":13,"enrollmentInfo":71,"targetDuration":13,"studyType":74,"phases":13,"briefSummary":75,"conditions":76,"keywords":78,"overallStatus":44,"whyStopped":13,"lastUpdateSubmitDate":83,"lastUpdatePostDateStruct":84,"startDateStruct":87,"completionDateStruct":89,"leadSponsor":91,"locationsCount":92},{"fullName":5,"class":6},"Memorial Sloan Kettering Cancer Center","OTHER",{"primaryOutcomes":8,"secondaryOutcomes":13,"otherOutcomes":13},[9],{"measure":10,"description":11,"timeFrame":12},"Supportive Care Needs of informal caregivers","measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)","3 years",null,{"allocation":13,"interventionModel":13,"interventionModelDescription":13,"primaryPurpose":13,"observationalModel":15,"timePerspective":16,"maskingInfo":13},"COHORT","PROSPECTIVE","A target sample of 120 ICs of patients with Erdheim-Chester Disease will be enrolled in this study. Additionally, a target sample of 50 ICs of patients with other histiocytic disorders will be enrolled.",[19],{"label":20,"type":13,"description":21,"interventionNames":22},"Caregivers of Patients","This is an observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases. That will collect data cross-sectionally, at a single time point. Caregiver-reported data will be completed in the form of online surveys by the participants themselves using the Research Electronic Data Capture Platform \\[RedCAP\\] platform.",[23],"Behavioral: online surveys",[25],{"type":26,"name":27,"description":28,"armGroupLabels":29,"otherNames":13},"BEHAVIORAL","online surveys","Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.",[20],[31],{"name":32,"affiliation":5,"role":33},"Eli Diamond, MD","PRINCIPAL_INVESTIGATOR",[35,39],{"name":32,"role":36,"phone":37,"phoneExt":13,"email":38},"CONTACT","212-610-0243","diamone1@mskcc.org",{"name":40,"role":36,"phone":41,"phoneExt":13,"email":13},"Katherine Panageas, DRPH","646-888-8237",[43],{"facility":5,"status":44,"city":45,"state":45,"zip":46,"country":47,"countryCode":48,"cosmosGeoPoint":49,"geoPoint":54,"contacts":55},"RECRUITING","New York","10065","United States","US",{"type":50,"coordinates":51},"Point",[52,53],-74.00597,40.71427,{"lat":53,"lon":52},[56,57,59],{"name":32,"role":36,"phone":37,"phoneExt":13,"email":13},{"name":58,"role":36,"phone":41,"phoneExt":13,"email":13},"Katherine Panageas, DrPH",{"name":32,"role":33,"phone":13,"phoneExt":13,"email":13},{"type":61,"investigatorFullName":13,"investigatorTitle":13,"investigatorAffiliation":13,"oldNameTitle":13,"oldOrganization":13},"SPONSOR","100361767",false,"NCT03990428","Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases","A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases","Inclusion Criteria:\n\n* Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim).\n* Proficiency to complete study assessments in English, evaluated at the time of consent.\n* Age 18 or over.\n\nExclusion Criteria:\n\n* Participant unwilling to sign consent.\n* Participant unable to complete web-based assessments.",true,"ALL","18 Years",{"count":72,"type":73},250,"ESTIMATED","OBSERVATIONAL","This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?",[77],"Supportive Care Needs of Caregivers",[79,80,81,82],"Supportive care","Erdheim-Chester Disease","Other Histiocytic Diseases","19-213","2026-07-01",{"date":85,"type":86},"2026-07-02","ACTUAL",{"date":88,"type":86},"2019-06-14",{"date":90,"type":73},"2027-06",{"name":5,"class":6},1]