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.
Study Type
OBSERVATIONAL
Enrollment
500
Memorial Sloan Kettering Cancer Center
New York, New York, United States
RECRUITINGCreate registry for Erdheim-Chester Disease and Other Histiocytoses
This ECD and Other Histiocytoses registry is motivated to capture comprehensive clinical information as well as patient-centered data about ECD and Other Histiocytoses patients.
Time frame: 3 years
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