Status:
RECRUITING
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
Lead Sponsor:
Memorial Sloan Kettering Cancer Center
Conditions:
Erdheim-Chester Disease
Eligibility:
All Genders
18+ years
Brief Summary
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 f...
Eligibility Criteria
Inclusion
- Diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm by either 1) documented histopathologic establishing ECD or HN or 2) documented histopathologic findings compatible with Erdheim-Chester disease or HN in the context of corroborating clinical and/or radiologic findings or 3) documented radiologic findings, in the absence of a biopsy having been performed or yielding evaluable tissue, that are felt by the Principal Investigator to unequivocally represent an ECD/HN diagnosis given the clinical context or 4) self reported with supporting documentation upon medical record collection.
- Proficiency in English, in the determination of the Investigator or by self report.
- Willing to have historical and future HN-related health records sent to Registry review.
Exclusion
- Patients unwilling to sign consent.
- Participants under the age of 18.
Key Trial Info
Start Date :
October 26 2017
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
October 1 2026
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT03329274
Start Date
October 26 2017
End Date
October 1 2026
Last Update
January 8 2026
Active Locations (1)
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1
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10065