Massive study launches to unravel mysteries of rare lymphatic diseases

NCT ID NCT05731141

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

Summary

This natural history study aims to collect data from 1,200 people with lymphatic anomalies—rare conditions affecting the body's lymph system—over many years. Researchers will track symptoms, perform genetic testing, and gather biospecimens to better understand why these conditions develop. The goal is to improve future treatments, not to test a new therapy.

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 study could provide crucial insights into how lymphatic anomalies develop and progress, paving the way for better treatments in the future.

What could go wrong

This is an observational study, not a treatment trial, so there is no direct benefit to participants. It may take many years to gather enough data to influence clinical practice.

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.

chylous ascites lymphangiectasis Lymphatic Abnormalities lymphatic malformation lymphatic system disorder lymphedema Osteolysis, Essential protein-losing enteropathy

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

  • Children's Hospital of Philadelphia

    NOT_YET_RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

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

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

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