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

Memorial Sloan Kettering Cancer Center (MSK)

Status: Enrolling

Conditions: Supportive Care Needs of Caregivers

Treatments: Behavioral: online surveys

Study type: Observational

Funder types: Other

Identifiers

NCT03990428

19-213

Details and patient eligibility

About

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?

Enrollment: 250 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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.

Trial design

250 participants in 1 patient group

Caregivers of Patients

Description:

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.

Treatment:

Behavioral: online surveys