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

Part of paid clinical trials in New York, New York.

Sponsor: Memorial Sloan Kettering Cancer Center
Study ID: NCT03990428
Status: Recruiting

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Conditions

Supportive Care Needs of Caregivers

Eligibility Criteria

Sex: ALL
Age: 18 Years - N/A
Healthy Volunteers: Accepted

Interventions

online surveys — BEHAVIORAL
Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.

Study Details

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?

Key Dates

Start date: Jun 14, 2019
Status verified: Sep 2025
Primary completion: Jun 30, 2026
Completion: Jun 30, 2026

Study Design

Enrollment: 250 participants (estimated)

Arms

Arm: Caregivers of Patients
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.

Primary Outcome Measure

Supportive Care Needs of informal caregivers [ Time Frame: 3 years ]

Central Contacts

Eli Diamond, MD
212-610-0243
[email protected]
Katherine Panageas, DRPH
646-888-8237

Locations (1)

Facility	City	State	ZIP	Site coordinators
Memorial Sloan Kettering Cancer Center	New York	New York	10065	Eli Diamond, MD 212-610-0243 Katherine Panageas, DrPH 646-888-8237 Eli Diamond, MD (PRINCIPAL_INVESTIGATOR)

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By research site

Memorial Sloan Kettering Cancer Center· New York, NY