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.
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To characterize the heterogeneity of lymphatic disorders, including demographics, presentation, and complications.
Timeframe: 15 years
To identify factors that are prognostic of the occurrence of complications, including effusions, coagulopathy, ectatic draining veins, prior infections, visceral involvement, bone involvement, and development of cardiopulmonary symptoms.
Timeframe: 15 years
To identify factors prognostic of poor outcome and use them to develop "staging" of lymphatic anomalies.
Timeframe: 15 years
To describe the natural history of lymphatic anomalies, including morbidity and mortality.
Timeframe: 15 years
To describe the therapies (medical and procedural), adverse events and responses to therapy in patients with lymphatic anomalies.
Timeframe: 15 years
To pilot quality of life, functional assessment and pain scoring tools in this patient population.
Timeframe: 15 years