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Massive study tracks hidden toll of rare immune diseases

NCT ID NCT05915208

First seen Jun 15, 2026 · Last updated Jun 15, 2026

Summary

This study follows 6,000 people with histiocytic disorders (like Langerhans cell histiocytosis) to understand long-term health problems, pain, mental health, and causes of death. Researchers compare participants to healthy controls to identify factors that lead to new health issues. The goal is to improve care and quality of life for those affected.

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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

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • University of Alabama at Birmingham

    RECRUITING

    Birmingham, Alabama, 35233, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

The condition(s) this trial relates to.

Erdheim-Chester Disease Histiocytic Sarcoma Histiocytosis Histiocytosis, Langerhans-Cell Histiocytosis, Sinus Neoplasms, Second Primary

As listed by the trial registrant

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