International LAM Registry initiates first study

The International LAM Registry (ILR), introduced to the Lymphangioleiomyomatosis (LAM) research community last year, is an outgrowth of the patient outcome reporting and hypothesis-generation site LAMsight and the second joint venture between New Media Medicine and the LAM Treatment Alliance.

LAM is a complex, multi-system disorder that strikes women in their child-bearing years. It is characterized by the slow proliferation of smooth muscle tissue in the lungs, kidneys, and brain. Decline is associated with a reduction in vascular activity, which reduces oxygen intake and significantly impairs activity.  LAM is ultimately fatal through destruction of lung tissue.  Lung transplantation is the only known treatment for LAM.  There are less than a thousand diagnosed patients with sporadic LAM in the United States today.

The ILR was conceived to engage the clinical community and encourage systematic sharing of clinical patient data to answer novel research questions and ultimately to support and accelerate bringing new researchers to LAM.  

The first stage of the rollout involves aggregation of worldwide data from young patients to characterize the clinical observation that young patients appear to progress more rapidly.  This is part of a larger effort to improve the clinical staging of LAM patients.  

The ILR moved out of an internal beta release and into active use on May 5th, 2011.