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Recruiting NCT03990428

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

— Observational Supportive Care Needs of Caregivers

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: online surveys.
Who it may be relevant to
Registry conditions: Supportive Care Needs of Caregivers. Basic parameters: from 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
United States
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Official title

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

Overview

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?

Interventions

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

Primary outcome measures

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

Eligibility criteria

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.

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: Yes

Study design

Observational model
Cohort

Study locations

United States · 1 center
  • Memorial Sloan Kettering Cancer Center — New York

Identifiers

NCT: NCT03990428 · 19-213

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗