Individually, lymphatic anomalies are rare disorders, and your physician may have never seen a case like yours. Like many rare disorders, there is not a lot of information about long-term effects and outcomes of these types of conditions or about what the most effective treatments are. Because the few patients with these disorders are spread across the globe, it is very important that we gather patient data from multiple institutions and patients in a centralized registry, with the goal of expediting clinical understanding and improving care.
Collection of data can be particularly difficult with deceased patients, but family members are encouraged to participate. It is important to learn as much as possible from every complication and/or death related to these diseases to better predict who is at risk and when to intervene. This will enable us to provide the more complete care for other patients in the future.
The Vascular Anomalies Special Interest Group within the American Society for Pediatric Hematology/Oncology has identified the Lymphatic Anomalies Registry as an important observational study with participation already from a diverse, international group of patients. We are encouraging participation from all centers that provide care to patients with vascular anomalies, and are working to unite these centers to run innovative clinical trials.
