Lymphatic Anomalies Registry
This is an observational study (meaning no new treatments are given) to better understand rare lymphatic anomalies like Lymphatic Malformation and Gorham-Stout Disease. Researchers want to learn about the natural course of these conditions, what causes complications, and how different treatments affect patients over time. The goal is to improve care for people with these conditions. You can join if you have a clinical diagnosis of a complex vascular tumor, malformation, or overgrowth syndrome with a significant lymphatic component. Success for this study means characterizing these disorders, identifying factors that predict complications, and developing ways to 'stage' (classify the severity of) lymphatic anomalies over 15 years. The current recruitment status is unclear.
- Study design
- This is an observational study planning to enroll 1000 participants. It is designed to collect information about lymphatic anomalies over time.
- What's involved
- Participation involves a short, 30-minute interview with study staff, which can be done in person or over the phone. You would also provide the registry with access to your medical records.
- Compensation
- Not stated in the trial record.
- Follow-up
- The primary goals of the study are measured at 15 years, suggesting a long-term follow-up period.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Lymphatic Anomalies Registry for the Assessment of Outcome Data
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Melisa Ruiz-Gutierrez, M.D. · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
Do you actually qualify for this trial?
Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.
Inclusion
What this trial measures
- To characterize the heterogeneity of lymphatic disorders, including demographics, presentation, and complications.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.15 years
- To identify factors prognostic of poor outcome and use them to develop "staging" of lymphatic anomalies.15 years
- To describe the natural history of lymphatic anomalies, including morbidity and mortality.15 years
- To describe the therapies (medical and procedural), adverse events and responses to therapy in patients with lymphatic anomalies.15 years
- To pilot quality of life, functional assessment and pain scoring tools in this patient population.15 years