Lymphatic Anomalies Registry for the Assessment of Outcome Data
Recruiting now
Conditions studied: 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
In brief
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.
Key facts
- Study ID
- NCT02399527
- Run by
- Boston Children's Hospital
- People needed
- 1000
- Starts
- 2013-06-01
- Expected to finish
- 2035-06-01
- Last updated by the study team
- 2026-04-24
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component
Where it is running
- Boston Children's Hospital — Boston, Massachusetts, United States (enrolling)
Full record on ClinicalTrials.gov
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