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

NCT03990428 — Recruiting, 250 participants, Memorial Sloan Kettering Cancer Center

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A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases

Registry	NCT03990428
Status	Recruiting
Study type	Observational
Enrollment	250 (Estimated)
Sponsor	Memorial Sloan Kettering Cancer Center (Other)
Conditions	Supportive Care Needs of Caregivers
Interventions	online surveys (Behavioral)
Dates	start 2019-06-14, primary completion 2027-06-01 (estimated), completion 2027-06-01 (estimated), first posted 2019-06-19, last updated 2026-07-02
Locations	1 site in United States

-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?

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+Arms and interventions

Arm	Type	Interventions	Description
Caregivers of Patients		Behavioral: online surveys	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.

online surveys (Behavioral): Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.

+Outcome measures

Primary outcomes

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

+Eligibility

Sex: All, ages: 18 Years to any, accepts healthy volunteers

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.

+Locations (1)

Facility	City	Country	Status
Memorial Sloan Kettering Cancer Center	New York, New York	United States	Recruiting

+Investigators

Eli Diamond, MD, Principal investigator, Memorial Sloan Kettering Cancer Center

My Notes

Public

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