NCT03329274 Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
| NCT ID | NCT03329274 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Memorial Sloan Kettering Cancer Center |
| Condition | Erdheim-Chester Disease |
| Study Type | OBSERVATIONAL |
| Enrollment | 500 participants |
| Start Date | 2017-10-26 |
| Primary Completion | 2026-10 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 500 participants in total. It began in 2017-10-26 with a primary completion date of 2026-10.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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 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.
Eligibility Criteria
Inclusion Criteria: * 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 Criteria: * Patients unwilling to sign consent. * Participants under the age of 18.
Contact & Investigator
Eli Diamond, MD
PRINCIPAL INVESTIGATOR
Memorial Sloan Kettering Cancer Center
Frequently Asked Questions
Who can join the NCT03329274 clinical trial?
This trial is open to participants of all sexes, aged 18 Years or older, studying Erdheim-Chester Disease. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT03329274 currently recruiting?
Yes, NCT03329274 is actively recruiting participants. Contact the research team at diamone1@mskcc.org for enrollment information.
Where is the NCT03329274 trial being conducted?
This trial is being conducted at New York, United States.
Who is sponsoring the NCT03329274 clinical trial?
NCT03329274 is sponsored by Memorial Sloan Kettering Cancer Center. The principal investigator is Eli Diamond, MD at Memorial Sloan Kettering Cancer Center. The trial plans to enroll 500 participants.