[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT03990428":3,"trial-entities:NCT03990428":85,"trial-summary:NCT03990428":92},{"id":4,"nct_id":4,"org_study_id":5,"brief_title":6,"official_title":7,"overall_status":8,"completion_date":9,"status_verified_date":10,"last_update_date":11,"start_date":12,"sponsor_name":13,"lead_sponsor_class":14,"has_dmc":15,"brief_summary":16,"detailed_description":15,"conditions":17,"keywords":19,"study_type":23,"primary_purpose":15,"phases":24,"enrollment_info":25,"interventions":28,"primary_outcomes":35,"secondary_outcomes":40,"sex":41,"minimum_age":42,"maximum_age":15,"healthy_volunteers":43,"eligibility_criteria":44,"std_ages":53,"locations":56,"central_contacts":74,"overall_officials":79,"references":81,"see_also_links":82},"NCT03990428","19-213","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","RECRUITING","2027-06","2026-07","2026-07-02","2019-06-14","Memorial Sloan Kettering Cancer Center","OTHER",null,"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?",[18],"Supportive Care Needs of Caregivers",[20,21,22,5],"Supportive care","Erdheim-Chester Disease","Other Histiocytic Diseases","OBSERVATIONAL",[],{"count":26,"type":27},250,"ESTIMATED",[29],{"type":30,"name":31,"description":32,"armGroupLabels":33},"BEHAVIORAL","online surveys","Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.",[34],"Caregivers of Patients",[36],{"measure":37,"description":38,"timeFrame":39},"Supportive Care Needs of informal caregivers","measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)","3 years",[],"ALL","18 Years",true,{"inclusion":45,"exclusion":49,"raw_text":52},[46,47,48],"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).","Proficiency to complete study assessments in English, evaluated at the time of consent.","Age 18 or over.",[50,51],"Participant unwilling to sign consent.","Participant unable to complete web-based assessments.","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.",[54,55],"ADULT","OLDER_ADULT",[57],{"facility":13,"status":8,"city":58,"state":58,"zip":59,"country":60,"contacts":61,"geoPoint":71},"New York","10065","United States",[62,66,69],{"name":63,"role":64,"phone":65},"Eli Diamond, MD","CONTACT","212-610-0243",{"name":67,"role":64,"phone":68},"Katherine Panageas, DrPH","646-888-8237",{"name":63,"role":70},"PRINCIPAL_INVESTIGATOR",{"lat":72,"lon":73},40.71427,-74.00597,[75,77],{"name":63,"role":64,"phone":65,"email":76},"diamone1@mskcc.org",{"name":78,"role":64,"phone":68},"Katherine Panageas, DRPH",[80],{"name":63,"affiliation":13,"role":70},[],[83],{"label":13,"url":84},"http:\u002F\u002Fwww.mskcc.org\u002Fmskcc\u002Fhtml\u002F44.cfm",{"nct_id":4,"conditions":86,"biomarkers":91},[21,87,88,89,90],"Histiocytic Diseases","Juvenile Xanthogranuloma","Langerhans Cell Histiocytosis","Rosai-Dorfman-Destombes Disease",[],{"nct_id":4,"found":43,"summary":93,"prompt_version":102},{"design":94,"status":95,"heading":6,"summary":96,"follow_up":97,"word_count":98,"commitments":99,"compensation":100,"drugs_mentioned":101},"This is an observational study aiming to enroll 250 participants. It is not a drug trial and does not involve different treatment groups.","completed","This study is looking at the supportive care needs of family members or friends who provide unpaid support (informal caregivers) for people with Erdheim-Chester disease and other related conditions like LCH, RDD, or JXG. The study uses online surveys to understand caregivers' needs, mood, and how they find meaning in their caregiving experience. We want to enroll 250 participants. The main goal is to understand these supportive care needs over a 3-year period. To join, you must be an informal caregiver aged 18 or older, able to complete surveys in English, and willing to sign a consent form. The study status is currently unclear.","The primary endpoint for measuring supportive care needs is at 3 years.",104,"You would complete online surveys about your supportive care needs, mood, and caregiving experience.","Not stated in the trial record.",[31],"v2"]