Actively Recruiting
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
Led by Memorial Sloan Kettering Cancer Center · Updated on 2026-01-08
500
Participants Needed
1
Research Sites
466 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
The investigators want to understand more about what kinds of health problems are caused by histiocytosis, what happens as a result of different treatments, and how ECD affects people's lives, their feelings and their attitudes. The investigators also want to learn how these things change over time for people with these conditions. To try to figure this out, doctors would like to collect information about people who have histiocytosis and how they are treated for this disease. Some participants will be asked to complete a brief interview over the telephone. Only a limited number of interviews will take place, and not everyone will be asked to participate in the interview. It is okay if the participant does not want to participate in the interview portion. If this is the case, the participant should let the study team member know when contacted.
CONDITIONS
Official Title
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm confirmed by histopathology, radiology, or self-report with medical records
- Proficiency in English as determined by the investigator or self-report
- Willingness to allow historical and future health records related to histiocytosis to be sent for registry review
You will not qualify if you...
- Unwillingness to sign consent to participate
- Under 18 years of age
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10065
Actively Recruiting
Research Team
E
Eli Diamond, MD
CONTACT
K
Katherine Panageas, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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