New registry aims to unlock mysteries of rare histiocyte disorders
NCT ID NCT03329274
First seen Nov 01, 2025 · Last updated Jun 19, 2026 · Updated 36 times
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.
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This is a summary of
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-••••
Locations
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Memorial Sloan Kettering Cancer Center
RECRUITINGNew York, New York, 10065, United States
Contact
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Contact Phone: •••-•••-••••
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.
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.