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Registry for Erdheim-Chester Disease and Other Histiocytoses

This study is creating a registry to better understand Erdheim-Chester Disease (a rare blood cancer) and other histiocytoses (conditions where too many immune cells build up in organs). Researchers want to learn about the health problems these conditions cause, how different treatments work, and how they affect people's lives and feelings over time. They will collect information from people with these conditions. To join, you must be 18 or older and have a diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm. The study aims to create this registry over three years. The current recruitment status is unclear.

Study design
This is an observational study planning to enroll 500 participants. It is not testing a specific drug or intervention.
What's involved
You may be asked to complete a brief telephone interview. Not everyone will be asked, and it's okay if you don't want to participate in the interview.
Compensation
Not stated in the trial record.
Follow-up
The primary goal is to create the registry, measured at 3 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03329274

Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

Recruiting
Not specifiedAges 18+Observational
Memorial Sloan Kettering Cancer Center
~500 participants
Updated 2026-01-08 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Create registry for Erdheim-Chester Disease and Other Histiocytoses
Measured over 3 years

Conditions

Erdheim-Chester Disease

Explore related trials

Erdheim-Chester DiseaseHistiocytic and Dendritic Cell NeoplasmLangerhans Cell HistiocytosisRosai-Dorfman-Destombes Disease

NCT03329274

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Memorial Sloan Kettering Cancer Center

    New York, New Yorkstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Eli Diamond, MD · PRINCIPAL_INVESTIGATOR · Memorial Sloan Kettering Cancer Center

Who to contact

Eli Diamond, MD
[email protected]
212-610-0243
Email the study team

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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.

What this trial measures

  • Create registry for Erdheim-Chester Disease and Other Histiocytoses3 years

    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.