Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases
Purpose
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?
Condition
- Supportive Care Needs of Caregivers
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Genders
- All
- Accepts Healthy Volunteers
- Yes
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.
Study Design
- Phase
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| 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. |
|
Recruiting Locations
Memorial Sloan Kettering Cancer Center
New York, New York 10065
New York, New York 10065
Contact:
Eli Diamond, MD
212-610-0243
Eli Diamond, MD
212-610-0243
More Details
- NCT ID
- NCT03990428
- Status
- Recruiting
- Sponsor
- Memorial Sloan Kettering Cancer Center