Massive castleman disease registry launches to unlock secrets of rare illness

NCT ID NCT02817997

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

Summary

This study is a global registry for people with Castleman disease, a rare lymph node disorder. Researchers will collect medical records, lab results, and patient surveys from up to 1,000 participants to better understand symptoms, treatments, and outcomes. No experimental drug or intervention is given—the goal is simply to gather information to guide future research and care.

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 Castleman disease, identify patient subtypes, and improve future treatments.

What could go wrong

This is an observational registry, not a treatment trial. It collects data only and does not test any new therapy, so direct patient benefits are unlikely.

Disclaimer Read more

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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Conditions

The condition(s) this trial relates to.

Castleman disease macular corneal dystrophy Multi-centric Castleman's Disease

As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

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

  • Contact

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

Locations

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

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

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

    Contact