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Recruiting
NCT02399527
Lymphatic Anomalies Registry for the Assessment of Outcome Data
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
Sex: All
Healthy volunteers: No
Enrollment: 1000
Sponsor: Boston Children's Hospital
Location: Boston Children's Hospital Boston Massachusetts
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.
Eligibility Criteria
Inclusion Criteria:
* Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component
Source: ClinicalTrials.gov (NCT02399527). StuddyBuddy aggregates publicly available trial information.
