Lymphatic Anomalies Registry

The purpose of the Lymphatic Anomalies Registry, created at Boston Children's Hospital, is to
create a database to help current and future patients diagnosed with a lymphatic anomaly. The
ultimate goal of the registry is to better understand and predict responses to therapies and
risk factors for complications. Although the Lymphatic Anomalies Registry exists at Boston
Children's Hospital, patients can be entered into the registry regardless of whether or not
they visit Boston Children's Hospital, thus increasing the program's accessibility. The
Lymphatic Anomalies Registry includes patients who have vascular anomalies with a lymphatic
component across various diagnoses. From the patient's perspective, participation in the
Lymphatic Anomalies Registry means taking part in a short, thirty minute interview, and
providing the registry with access to medical records. The interview is conducted verbally
with study staff of the Lymphatic Anomalies Registry, and can take place either at the
hospital, or over the phone. During the interview, the registry will inquire about the
patient's diagnosis, disease features, medical therapies, and procedures. Interested
prospective patients will receive an introductory packet from the registry with information
on how to proceed in the registry process. All obtained patient information is housed on a
secure, HIPPA compliant, internal database, managed by Boston Children's Hospital staff.
Patient information entered into the external database is de-identified. The research teams
will also obtain a medical record release form to request the patient's medical record for
review in our study.

Inclusion Criteria:

- Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with
significant lymphatic component