Snapshots of the Data
Since the International LGDA Registry for Lymphatic Malformations (LGDA Registry) first went online more than 200 patients living on 6 continents have joined. The charts in this post highlight some of what we’ve learned so far about these participants’ diagnoses; what percentage have disease in the chest, bones, abdomen, pelvis and skin; and how many report having disabilities related to their disease. This is only a sampling of the data obtained from the survey questions answered by participants.
About the registry: The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) established the International LGDA Registry for Lymphatic Malformations (LGDA Registry) as an internet-based information database for researchers and clinicians, as well as an information network for individuals with lymphangiomatosis and Gorham’s disease and their families.
The registry collects and analyzes information about patients with these conditions in order to expand the basic knowledge about these diseases and their impact on patients and families; assess gaps in service; promote access to care; develop best standards of practice for diagnosis and clinical management; and connect families to research opportunities.
The LGDA Registry is a critical part of the LGDA’s efforts to raise awareness about these diseases; provide patients and their families with information and a strong support network; and improve the quality of care of individuals with lymphangiomatosis, Gorham’s disease, other lymphatic malformations, and osteolytic bone diseases.
If you are a patient or the parent of a patient under age 18, we urge you to join the registry and contribute to the knowledge about these extraordinarily rare diseases.
For questions about the LGDA Registry or assistance in completing the survey, contact the coordinator at 318-734-8240 or firstname.lastname@example.org.