Research Partners & Initiatives
The Lymphangiomatosis & Gorham’s Disease Alliance works closely with the Lymphatic Malformation Institute (LMI) to promote and fund research and is the sponsor of the International LGDA Registry for Lymphatic Malformations, which collects medical and demographic information about patients with lymphangiomatosis and Gorham’s disease, as well as other lymphatic malformations and osteolytic bone diseases.
The Lymphatic Malformation Institute (LMI) was established in December, 2010, and is focused, as a whole, on advancing the understanding of the lymphatic system and, specifically, advancing the understanding of the complex lymphatic anomalies (CLAs), including Generalized lymphatic anomaly (GLA)/Lymphangiomatosis, Gorham-Stout disease (GSD), Kaposiform lymphangiomatosis (KLA), and Central Conducting lymphatic anomaly (CCLA).
The goal of the LMI is to find cures and treatments for these life-threatening disorders that have received very little attention from the scientific community in the past. The LMI seeks to fill this critical gap by identifying, organizing and funding research studies by medical and research professionals, and also working closely with other foundations with similar objectives.
The International LGDA Registry for Lymphatic Malformations (LGDA Registry) a patient outreach and research development project of the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA), established in 2013 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; connect patients to research opportunities; and provide investigators de-identified patient data.
Investigators interested in acquiring de-identified data from the registry or recruiting for IRB-approved studies should contact the LGDA Registry Coordinator
Patients (or the parent or guardian of a patient under the age of 18 years) may join the registry at www.lgdaregistry.org