Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

NCT03329274 | Recruiting

• 1 other identifier: 17-516
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 1

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.

Conditions

Erdheim-Chester Disease

Keywords

registry; Other Histiocytoses; Langerhans cell histiocytosis; Rosai Dorfman disease; 17-516

Outcome Measures

Primary Outcomes (1)

• Create 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.

  3 years

Study Arms (1)

Patients with Erdheim-Chester Disease and Other Histiocytoses

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with Erdheim-Chester Disease and other HN will be enrolled in this registry study.

You may qualify if:

• 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.

You may not qualify if:

• Patients unwilling to sign consent.
• Participants under the age of 18.

Sponsors & Collaborators

• Memorial Sloan Kettering Cancer Center: lead

Study Sites (1)

Memorial Sloan Kettering Cancer Center

New York, New York, 10065, United States

RECRUITING

Related Publications (2)

• Reiner AS, Alici Y, Correa DD, Bossert D, Sigler AM, Fournier D, Brewer K, Goyal G, Atkinson TM, Marathe P, Mao JJ, Panageas KS, Diamond EL. Anxiety and depression in patients with histiocytic neoplasms and their associated clinical features. Blood Adv. 2025 Mar 25;9(6):1376-1386. doi: 10.1182/bloodadvances.2024014850.

  PMID: 39626273 DERIVED

• Kirchner J, Hatzoglou V, Buthorn JB, Bossert D, Sigler AM, Reiner AS, Ulaner GA, Diamond EL. 18F-FDG PET/CT versus anatomic imaging for evaluating disease extent and clinical trial eligibility in Erdheim-Chester disease: results from 50 patients in a registry study. Eur J Nucl Med Mol Imaging. 2021 Apr;48(4):1154-1165. doi: 10.1007/s00259-020-05047-8. Epub 2020 Oct 15.

  PMID: 33057928 DERIVED

Related Links

• Memorial Sloan Kettering Cancer Center

Biospecimen

Retention: SAMPLES WITHOUT DNA

tissue

MeSH Terms

Conditions

Erdheim-Chester Disease; Histiocytosis, Langerhans-Cell; Histiocytosis, Sinus

Condition Hierarchy (Ancestors)

Histiocytosis, Non-Langerhans-Cell; Histiocytosis; Lymphatic Diseases; Hemic and Lymphatic Diseases; Lung Diseases, Interstitial; Lung Diseases; Respiratory Tract Diseases

Study Officials

• Eli Diamond, MD

  Memorial Sloan Kettering Cancer Center

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Eli Diamond, MD

CONTACT

212-610-0243; diamone1@mskcc.org

Katherine Panageas, PhD

CONTACT

646-888-8237

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 3 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 26, 2017
• First Posted: November 1, 2017
• Study Start: October 26, 2017
• Primary Completion (Estimated): October 1, 2026
• Study Completion (Estimated): October 1, 2026
• Last Updated: January 8, 2026

Record last verified: 2026-01

Locations

US (1)