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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

Who can join

Ages 18 and older · All sexes · Healthy volunteers welcome

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.

About the study

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?

What is being tested

• online surveys (behavioral)

Sponsor: Memorial Sloan Kettering Cancer Center · Participants: 250 · Started: Jun 14, 2019

Contact the study team

• Eli Diamond, MD · Phone: 212-610-0243
• Katherine Panageas, DRPH · Phone: 646-888-8237

Official record on ClinicalTrials.gov — NCT03990428

Locations in the U.S.

Conditions

• Erdheim-Chester Disease

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.