Recruiting

Observational Study

Sponsor:

Memorial Sloan Kettering Cancer Center

Code:

NCT03990428

Conditions

Supportive Care Needs of Caregivers

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Interventions

online surveys

Study Details

Brief 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?

Conditions

Supportive Care Needs of Caregivers

Study ID

NCT03990428

Start date

Jun 14, 2019

Status verified date

Jul, 2026

Completion date

Jun, 2027

Anticipated

Primary completion date

Jun, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

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

Enrollment

250 participants

Anticipated

Interventions and Outcome Measures

Arms

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.

Interventions

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 measure

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

Central Contacts and Locations

Central contacts

Eli Diamond, MD

212-610-0243diamone1@mskcc.org

Katherine Panageas, DRPH

646-888-8237

Locations

Memorial Sloan Kettering Cancer Center

Recruiting

New York, New York, United States, 10065

Contacts

Eli Diamond, MD

212-610-0243

Katherine Panageas, DrPH

646-888-8237

Principal Investigator:

Eli Diamond, MD

More Information

Sponsor

Memorial Sloan Kettering Cancer Center

Last update posted

Jul 2, 2026

Last verified

Jul, 2026

Keywords

  • Supportive care
  • Erdheim-Chester Disease
  • Other Histiocytic Diseases
  • 19-213

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Memorial Sloan Kettering Cancer Center on 2026-07-02.