Study Objective: 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.
Principal Investigator: Eli Diamond, MD, Memorial Sloan Kettering Cancer Center
Contact Information: Eli Diamond, MD, phone: 212-610-0720, email: neuhistiores@mskcc.org
Requested Participant Involvement: Self-identified informal caregiver (anyone who provides unpaid help or support) to an Erdheim-Chester Disease patient, 18 years and older, and proficiency to complete study assessments in English. Participants cannot reside in Europe because of European regulations. Caregivers of patients participating the ECD registry are specifically requested, if possible, and the study team can help facilitate registry enrollment.
ClinicalTrials.gov Identifier: NCT03990428