Registry for Patients with Erdheim-Chester Disease and Other Histiocytoses

Last updated: September 19, 2024
Sponsor: Memorial Sloan Kettering Cancer Center
Overall Status: Active - Recruiting

Phase

N/A

Condition

Histiocytoma

Treatment

N/A

Clinical Study ID

NCT03329274
17-516
  • Ages > 18
  • All Genders

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfmandisease, or another histiocytic neoplasm by either 1) documented histopathologicestablishing ECD or HN or 2) documented histopathologic findings compatible withErdheim-Chester disease or HN in the context of corroborating clinical and/orradiologic findings or 3) documented radiologic findings, in the absence of a biopsyhaving been performed or yielding evaluable tissue, that are felt by the PrincipalInvestigator to unequivocally represent an ECD/HN diagnosis given the clinicalcontext or 4) self reported with supporting documentation upon medical recordcollection.

  • 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 Registryreview.

Exclusion

Exclusion Criteria:

  • Patients unwilling to sign consent.

  • Participants under the age of 18.

Study Design

Total Participants: 250
Study Start date:
October 26, 2017
Estimated Completion Date:
October 31, 2025

Connect with a study center

  • Memorial Sloan Kettering Cancer Center

    New YorK, New York 10065
    United States

    Active - Recruiting

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