Σκοπός της μελέτης: 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.
Επικεφαλής ερευνητής: Eli Diamond, MD, Memorial Sloan Kettering Cancer Center
Στοιχεία επικοινωνίας: Eli Diamond, MD, phone: 212-610-0720, email: neuhistiores@mskcc.org
Απαιτούμενη συμμετοχή των συμμετεχόντων: 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.
Αναγνωριστικό ClinicalTrials.gov: NCT03990428