The Cleveland Clinic Foundation will serve as the Data
Coordinating Center and will compile and analyze data gathered from the
six participating LAM Registry Clinical Centers (see Appendix), as well
as from contributing lung transplant centers and referring physicians.
Eligible patients are to be seen yearly for up to 4 years at the
Clinical Centers or, in some cases, by individual referring physicians.
Tissue collected by the LAM Registry will be stored at a central NHLBI
repository. Outcome events include measures of pulmonary function
(eg, spirometry and, when available, lung volumes and
diffusing capacity), arterial blood gases or oximetry, walking and
resting oxygen titration, cardiopulmonary stress testing,
cause-specific mortality, functional status, and clinical events
associated with lung transplantation. The Registry is a voluntary
project. The Registry is not a randomized clinical trial. It is
important to emphasize that patients will be followed without altering
the usual regimens as prescribed by their managing physicians.
Recruitment for the Registry is currently underway. We welcome any
inquiries (Eugene Sullivan, MD, FCCP, (216) 445-2610) and are happy to
inform the readership of CHEST about this important project
to clarify the natural history of LAM.