Lymphatic Anomalies Registry for the Assessment of Outcome Data

What this Trial Is About

Lymphatic anomalies are a rare group of vascular disorders that are not well understood, with limited knowledge about their natural history, long-term outcomes, risks, and the benefits of treatments. This observational study aims to improve understanding of these diseases to enhance care for patients with lymphatic anomalies. The research is conducted through the Lymphatic Anomalies Registry, which collects detailed data over time to better predict treatment responses and complications. Participants in the registry include individuals with vascular anomalies that have a lymphatic component, regardless of whether they visit Boston Children's Hospital. Enrolled patients participate in a brief 30-minute interview, either in person or over the phone, where information about their diagnosis, disease features, treatments, and procedures is gathered. Medical records are also reviewed with patient permission. All data is securely stored in a HIPAA-compliant database and de-identified for research use. Throughout the study, patients provide annual follow-up information on their health status, treatments, and quality of life. Researchers assess various outcomes such as disease heterogeneity, complications, prognostic factors, therapy responses, and patient functionality and pain. The study aims to characterize morbidity and mortality over 15 years, helping to develop better staging and management of lymphatic anomalies. Participation involves sharing medical information and completing interviews to contribute to long-term knowledge.

Lymphatic Anomalies Registry for the Assessment of Outcome Data