New registry aims to unlock mysteries of rare histiocyte disorders

NCT ID NCT03329274

Recruiting now Knowledge-focused Sponsor: Memorial Sloan Kettering Cancer Center Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study creates a registry for people with Erdheim-Chester disease and related histiocytoses. Researchers will collect medical information and patient experiences over time to better understand these rare conditions. Up to 500 participants will be enrolled, and some may be asked to complete a brief phone interview. The goal is to capture comprehensive data on symptoms, treatments, and quality of life.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: If successful, this registry could help doctors better understand how histiocytoses progress and respond to treatments, potentially guiding future care.
What could go wrong: This is an observational registry, not a treatment trial. It will not directly test any new therapy, so it may not lead to immediate changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

Erdheim-Chester disease histiocytic and dendritic cell neoplasm Histiocytosis, Langerhans-Cell Langerhans cell histiocytosis sinus histiocytosis with massive lymphadenopathy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ERDHEIM-CHESTER DISEASE

Contacts and locations

Locations

Memorial Sloan Kettering Cancer Center
RECRUITING

New York, New York, 10065, United States

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