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Scientists launch global effort to unravel mysteries of rare lymphatic diseases

NCT ID NCT02399527

Recruiting now Knowledge-focused Sponsor: Boston Children's Hospital Source: ClinicalTrials.gov ↗

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

Summary

This study is creating a registry of up to 1,000 people with rare lymphatic system disorders. Researchers will collect information from medical records and yearly surveys to understand how these diseases progress, what treatments are used, and how they affect quality of life. The goal is to improve care and outcomes for patients with these poorly understood conditions.

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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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Conditions

The condition(s) this trial relates to.

angioosteohypertrophic syndrome blue rubber bleb nevus CLOVES syndrome diffuse lymphatic malformation Gorham-Stout disease kaposiform hemangioendothelioma kaposiform lymphangiomatosis Lymphatic Abnormalities lymphatic malformation lymphatic malformation 12 Osteolysis, Essential tufted angioma vascular malformation

As listed by the trial registrant

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

BLUE RUBBER BLEB NEVUS SYNDROME CENTRAL CONDUCTING LYMPHATIC ANOMALY CLOVES SYNDROME GENERALIZED LYMPHATIC ANOMALY (GLA) GORHAM-STOUT DISEASE ("DISAPPEARING BONE DISEASE") KAPOSIFORM HEMANGIOENDOTHELIOMA/TUFTED ANGIOMA KAPOSIFORM LYMPHANGIOMATOSIS KLIPPEL TRENAUNAY SYNDROME LYMPHANGIOMATOSIS LYMPHATIC MALFORMATION

Contacts and locations

Study contacts

  • Contact

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

  • Contact

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

Locations

  • Boston Children's Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

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

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

    Contact