Recruiting

NCT Number: NCT03329274

Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

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.

Recruiting

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Key information

Conditions

Erdheim-Chester Disease Hemic and Lymphatic Diseases Histiocytosis Histiocytosis, Langerhans-Cell Histiocytosis, Non-Langerhans-Cell Histiocytosis, Sinus Lung Diseases Lung Diseases, Interstitial Lymphatic Diseases Respiratory Tract Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Memorial Sloan Kettering Cancer Center

New York, 10065, United States

Location status: Recruiting

Location contact

Eli Diamond, MD

PRINCIPAL_INVESTIGATOR

Eli Diamond, PhD

CONTACT

212-610-0243

Katherine Panageas, MD

CONTACT

646-888-8237

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Primary outcomes

Create registry for Erdheim-Chester Disease and Other Histiocytoses

Time frame: 3 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.

Study contacts

Contact information is provided by the study sponsor or research team.

Eli Diamond, MD

CONTACT

[email protected]

212-610-0243

Katherine Panageas, PhD

CONTACT

646-888-8237

Sponsors and collaborators

Lead sponsor

Memorial Sloan Kettering Cancer Center

Other

Registry information

Important dates

Study start: 2017
Primary completion: 2026
Study completion: 2026
First posted: Nov 1, 2017
Registry last updated: Jan 8, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting