RecruitingNCT03990428

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


Sponsor

Memorial Sloan Kettering Cancer Center

Enrollment

250 participants

Start Date

Jun 14, 2019

Study Type

OBSERVATIONAL

Conditions

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?


Eligibility

Min Age: 18 Years

Inclusion Criteria3

  • 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 Criteria2

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

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Interventions

BEHAVIORALonline surveys

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


Locations(1)

Memorial Sloan Kettering Cancer Center

New York, New York, United States

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NCT03990428