Understanding the supportive care needs of caregivers for patients with Erdheim-Chester disease
A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
This study is trying to find out what kind of support caregivers need when helping patients with Erdheim-Chester disease and similar conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 250 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Memorial Sloan Kettering Cancer Center Academic / other |
| Locations | 1 site (New York, New York) |
| Trial ID | NCT03990428 on ClinicalTrials.gov |
What this trial studies
This observational study aims to identify the supportive care needs of informal caregivers who provide unpaid assistance to patients with Erdheim-Chester disease and other histiocytic diseases. Participants will complete online surveys to share their experiences and challenges in caregiving. The study focuses on gathering qualitative data to better understand the unique needs of these caregivers, which may inform future support services and interventions.
Who should consider this trial
Good fit: Ideal candidates for this study are informal caregivers aged 18 or older who provide unpaid support to patients with Erdheim-Chester disease or related conditions.
Not a fit: Patients who are not caregivers or those who cannot complete web-based assessments may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved support systems for caregivers, enhancing their well-being and ability to care for patients.
How similar studies have performed: While there may be studies focusing on caregiver needs in other contexts, this specific approach to Erdheim-Chester disease and related histiocytic diseases is relatively novel.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
New York, New York
- Memorial Sloan Kettering Cancer Center — New York, New York, United States (Recruiting)
Study contacts
- Principal investigator: Eli Diamond, MD — Memorial Sloan Kettering Cancer Center
- Study coordinator: Eli Diamond, MD
- Email: diamone1@mskcc.org
- Phone: 212-610-0243
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.