Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

Memorial Sloan Kettering Cancer Center (MSK)

Status: Enrolling

Conditions: Erdheim-Chester Disease

Study type: Observational

Funder types: Other

Identifiers

NCT03329274

17-516

Details and patient eligibility

About

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.

Enrollment: 500 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.

Trial design

500 participants in 1 patient group

Patients with Erdheim-Chester Disease and Other Histiocytoses