Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

Erdheim-Chester Disease Clinical Trial

Official title:

Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT03329274
• Other study ID #: 17-516
• Status: Recruiting
• Start date: October 26, 2017
• Est. completion date: October 2024

Study information

• Verified date: December 2023
• Source: Memorial Sloan Kettering Cancer Center
• Contact: Eli Diamond, MD
• Phone: 212-610-0243
• Email: diamone1[@]mskcc.org
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial 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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 250
• Est. completion date: October 2024
• Est. primary completion date: October 2024
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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.

Related Conditions & MeSH terms

• Erdheim-Chester Disease
• Histiocytosis

Locations

Country	Name	City	State
United States	Memorial Sloan Kettering Cancer Center	New York	New York

Sponsors (1)

Lead Sponsor	Collaborator
Memorial Sloan Kettering Cancer Center

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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

External Links

•   Memorial Sloan Kettering Cancer Center