Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases

Recruiting

• Conditions: Supportive Care Needs of Caregivers

• Registration Number: NCT03990428
• Lead Sponsor: Memorial Sloan Kettering Cancer Center

Brief Summary

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?

Detailed Description

Not available

Study Timeline

• Study Start: 2019-06-14
• Study First Submitted: 2019-06-14
• Study First Submitted QC: 2019-06-17
• Study First Posted: 2019-06-19
• Status Verified: 2025-09
• Last Update Submitted: 2025-09-10
• Last Update Posted: 2025-09-11
• Primary Completion: 2026-06
• Study Completion: 2026-06-01

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 250

Inclusion Criteria

• 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.

Exclusion Criteria

• Participant unwilling to sign consent.
• Participant unable to complete web-based assessments.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Supportive Care Needs of informal caregivers	3 years	measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)

Trial Locations

Locations (1)

Memorial Sloan Kettering Cancer Center; 🇺🇸 New York, New York, United States