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Lymphatic Anomalies Registry for the Assessment of Outcome Data

NCT02399527 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 1000

Last updated 2026-04-24

No results posted yet for this study

Summary

Lymphatic anomalies are a rare subset of vascular anomalies that are poorly understood. the understanding of the natural history, long-term outcomes, risk factors for morbidity and mortality, and the relative benefit of medical therapies and procedures is limited.The goal of this project is to better understand these diseases and improve the care of theses rare patients. To do this, the investigators are conducting an observational study of patients with lymphatic anomalies, including an annual follow-up questionnaire to gather prospective data on mortality, morbidity, treatments, and functionality as well as quality of life.

Conditions

  • Lymphatic Malformation
  • Generalized Lymphatic Anomaly (GLA)
  • Central Conducting Lymphatic Anomaly
  • CLOVES Syndrome
  • Gorham-Stout Disease ("Disappearing Bone Disease")
  • Blue Rubber Bleb Nevus Syndrome
  • Kaposiform Lymphangiomatosis
  • Kaposiform Hemangioendothelioma/Tufted Angioma
  • Klippel-Trenaunay Syndrome
  • Lymphangiomatosis

Sponsors & Collaborators

Principal Investigators

  • Melisa Ruiz-Gutierrez, M.D. · Boston Children's Hospital

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-06-30
Primary Completion
2035-06-30
Completion
2035-06-30

Countries

  • United States

Study Locations

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Entities

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02399527 on ClinicalTrials.gov