The LGDA Patient Registry for Complex Lymphatic Anomalies (also known as the LGDA Patient Registry) was launched in 2013 to connect the Complex Lymphatic Anomalies patient and research communities, support study recruitment, and expedite research for a cure. The LGDA Patient Registry has compiled more CLA patient-reported data than any other research effort in the world.

When you join the registry, you are helping us to understand the size and diversity of the CLA patient community. This information helps improve clinical trial and research planning. Also, the data you provide can be used in research to generate hypotheses and help answer important questions about complex lymphatic anomalies.

Most importantly, the data you provide helps us to understand the patient experience and determine what outcomes are most important to patients.

• We combine your de-identified information with everyone else’s to look for trends for further investigation. You will have access to this summary data once you have registered. This will offer you a bird’s eye view of how the illness affects our community. You will not be able to see how any individual answered a given question, nor will others know how you answered. But all participants will be able to view the combined data in tables and charts that allow everyone to see how many people selected a given answer.
• To keep your registry profile up-to-date, we will email you periodically with an invitation to review your information or to complete new surveys on various subjects, such as quality of life and treatments. The surveys will vary in length (with some as short as 4 questions) but will never be longer than the initial survey you complete when creating your profile.
• We use your information to match you with research studies. Creating a registry profile will NOT sign you up or commit you to a trial or to research participation. Instead, the registry gives us a way to notify you about upcoming trials and other research. We will give you a description of the research and the contact information for the study team. Only you can decide whether you would like to participate.
• We may email you with opportunities to participate in online study surveys that may be of interest to people with a CLA.
• We share de-identified information with researchers and those developing treatments for complex lymphatic anomalies. To protect your privacy, researchers do not have access to information that can identify you. Your personal information will never be shared without your permission. To protect you further, each researcher who requests data must complete our rigorous screening process, including a confidentiality agreement. We only work with researchers and treatment developers who are engaging in studies that we believe will benefit our members.