BACKGROUND:
LAM is a rare multi-system disease that can affect the lungs of young women, is of uncertain
cause, is usually progressive, and can cause debilitating lung disease which may be
corrected with lung transplantation. Several hundred women with the disease have been
identified, largely through a LAM Foundation in Cincinnati, Ohio.
DESIGN NARRATIVE:
The Data and Coordinating Center is located at the Cleveland Clinic Foundation. The registry
has six major clinical centers: Cleveland Clinic Foundation, Mayo Clinic-Rochester, National
Heart, Lung, and Blood Institute, National Jewish Medical and Research Center, New England
Medical Center, and Stanford University Medical Center. Data and lung tissue collected by
the registry will be used to characterize the clinical features and natural history of the
disease and to determine the efficacy of lung transplantation in this disorder. 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 Office of Research on Women's Health provided funding in FY 1997 in the amount of
$100,000.
Observational
Observational Model: Natural History
Gerald Beck
The Cleveland Clinic
United States: Federal Government
5002
NCT00005486
July 1997
June 2003
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