Registry for patients with Erdheim-Chester Disease and other histiocytoses

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry aims to gather comprehensive information about patients diagnosed with Erdheim-Chester Disease and other histiocytic neoplasms. By collecting health data, treatment outcomes, and patient experiences, the study seeks to understand the impact of these diseases over time. Participants may also be invited to share their experiences through brief telephone interviews, although participation in interviews is optional. The goal is to enhance knowledge about histiocytosis and improve future patient care.

Why it matters

Who can join: the full rules

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.

Where it's running

• Memorial Sloan Kettering Cancer Center
  New York, New York, United States Recruiting

Study contacts

• Principal investigator: Eli Diamond, MD — Memorial Sloan Kettering Cancer Center
• Study coordinator: Eli Diamond, MD
• Email: diamone1@mskcc.org
• Phone: 212-610-0243

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.