Recruiting

NCT Number: NCT03990428

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

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?

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Supportive Care Needs of Caregivers Erdheim-Chester Disease Hemic and Lymphatic Diseases Histiocytosis Histiocytosis, Non-Langerhans-Cell Lymphatic Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Memorial Sloan Kettering Cancer Center

New York, 10065, United States

Location status: Recruiting

Location contact

Eli Diamond, MD

CONTACT

212-610-0243

Eli Diamond, MD

PRINCIPAL_INVESTIGATOR

Katherine Panageas, DrPH

CONTACT

646-888-8237

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

online surveys

Behavioral

Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.

Primary outcomes

Supportive Care Needs of informal caregivers

Time frame: 3 years

measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)

Study contacts

Contact information is provided by the study sponsor or research team.

Eli Diamond, MD

CONTACT

[email protected]

212-610-0243

Katherine Panageas, DRPH

CONTACT

646-888-8237

Sponsors and collaborators

Lead sponsor

Memorial Sloan Kettering Cancer Center

Other

Registry information

Official study title

A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases

Important dates

Study start: 2019
Primary completion: 2027
Study completion: 2027
First posted: Jun 19, 2019
Registry last updated: Jul 2, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting