Recruiting

Observational Study

Sponsor:

Memorial Sloan Kettering Cancer Center

Code:

NCT03329274

Conditions

Erdheim-Chester Disease

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Study Details

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

Study ID

NCT03329274

Start date

Oct 26, 2017

Status verified date

Jan, 2026

Completion date

Oct, 2026

Anticipated

Primary completion date

Oct, 2026

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

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.

Study Design

Enrollment

500 participants

Anticipated

Interventions and Outcome Measures

Arms

Patients with Erdheim-Chester Disease and Other Histiocytoses

Primary outcome measure

  • Create registry for Erdheim-Chester Disease and Other Histiocytoses [ Time Frame: 3 years ]

Central Contacts and Locations

Central contacts

Eli Diamond, MD

212-610-0243diamone1@mskcc.org

Katherine Panageas, PhD

646-888-8237

Locations

Memorial Sloan Kettering Cancer Center

Recruiting

New York, New York, United States, 10065

Contacts

Eli Diamond, PhD

212-610-0243

Katherine Panageas, MD

646-888-8237

Principal Investigator:

Eli Diamond, MD

More Information

Sponsor

Memorial Sloan Kettering Cancer Center

Last update posted

Jan 8, 2026

Last verified

Jan, 2026

Keywords

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

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Memorial Sloan Kettering Cancer Center on 2026-01-08.