A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
Status: Recruiting
Location: See location...
Intervention Type: Behavioral
Study Type: Observational
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
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: t
View:
• 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.
Locations
United States
New York
Memorial Sloan Kettering Cancer Center
RECRUITING
New York
Contact Information
Primary
Eli Diamond, MD
diamone1@mskcc.org
212-610-0243
Backup
Katherine Panageas, DRPH
646-888-8237
Time Frame
Start Date: 2019-06-14
Estimated Completion Date: 2026-06
Participants
Target number of participants: 250
Treatments
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.
Related Therapeutic Areas
Sponsors
Leads: Memorial Sloan Kettering Cancer Center