Communications to the Editor |

Lymphangioleiomyomatosis Registry FREE TO VIEW

Eugene J. Sullivan, MD, FCCP; Gerald J. Beck, PhD; Hannah H. Peavy, MD; Barry L. Fanburg, MD
Author and Funding Information

Principal Investigators, Data Coordinating Center Cleveland Clinic Foundation Cleveland, OH NHLBI Division of Lung Diseases Bethesda, MD Chairman, Steering Committee for LAM Registry New England Medical Center Boston, MA

Chest. 1999;115(1):301. doi:10.1378/chest.115.1.301
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To the Editor:

We wish to notify the readership of CHEST about the existence of a multicenter registry of individuals with lymphangioleiomyomatosis (LAM). During the next 4 years, this Registry, sponsored by the National Heart, Lung, and Blood Institute (NHLBI) with additional funding contributed by the Office of Research on Women’s Health, intends to enroll and follow individuals with the diagnosis of LAM. The purpose of the Registry is to characterize the natural history of this disorder and to collect and store biologic material. The LAM Registry should facilitate future clinical studies and studies into the molecular basis of this disease.

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.

We appreciate the readers’ attention to this matter, and we hope to have future opportunities to update the pulmonary community on the progress of the LAM Registry.

Correspondence to: Eugene J. Sullivan, MD, FCCP, LAM Data Coordinating Center, Cleveland Clinic Foundation, 9500 Euclid Avenue, Cleveland, OH 44195; e-mail: sullivae@cesmtp.ccf.org

Participating LAM Registry Clinical Centers

Cleveland Clinic Foundation, Cleveland, OH

Alejandro C. Arroliga, MD, FCCP, (216) 445-5765

Mayo Clinic, Rochester, MN

Jay H. Ryu, MD, FCCP, (507) 284-2447

National Heart, Lung, and Blood Institute, Bethesda, MD

Joel Moss, MD, PhD, (301) 496-3632

National Jewish Medical and Research Center, Denver, CO

Kevin K. Brown, MD, FCCP, (303) 398-1289

New England Medical Center, Boston, MA

Barry L. Fanburg, MD, (617) 636-5871

Stanford University, Stanford, CA

Thomas A. Raffin, MD, FCCP, (650) 723-6381




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