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

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.

Study design
This is an observational study aiming to enroll 250 participants. It is not a drug trial and does not involve different treatment groups.
What's involved
You would complete online surveys about your supportive care needs, mood, and caregiving experience.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoint for measuring supportive care needs is at 3 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03990428

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

Recruiting
Not specifiedAges 18+Observational
Memorial Sloan Kettering Cancer Center
~250 participants
Updated 2026-07-02 on ClinicalTrials.gov
What's tested:online surveys

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Supportive Care Needs of informal caregivers
Measured over 3 years

Conditions

Supportive Care Needs of Caregivers

Explore related trials

Erdheim-Chester DiseaseHistiocytic DiseasesJuvenile XanthogranulomaLangerhans Cell HistiocytosisRosai-Dorfman-Destombes Disease

NCT03990428

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Memorial Sloan Kettering Cancer Center

    New York, New Yorkstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Eli Diamond, MD · PRINCIPAL_INVESTIGATOR · Memorial Sloan Kettering Cancer Center

Who to contact

Eli Diamond, MD
[email protected]
212-610-0243
Email the study team

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Eligibility criteria

Inclusion

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

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

What this trial measures

  • Supportive Care Needs of informal caregivers3 years

    measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)