LAM Foundation Participating in LAM Research

Patients who are followed by doctors outside these centers can also be entered into the Registry. Once a patient enrolls, information will be gathered annually for up to four years. It is important to note that this Registry does not replace the ongoing NIH LAM research protocol in which many LAM patients have been participating. The NIH LAM research protocol is a separate project. Eligible LAM patients may participate in both the NIH LAM protocol and the LAM Registry. Information gathered through the Registry will be complementary to the insights gained from the NIH LAM research protocol. The Registry will serve as a comprehensive database of women with LAM in the U.S. and Canada.

LAM PATIENT RESEARCH PROGRAMS
Some LAM patients may be eligible to participate in clinical studies at the Warren Grant Magnuson Clinical Center of the National Institutes of Health in Bethesda, Maryland. Participants must meet specific LAM Patient Protocol requirements.
NATIONAL REGISTRY OF LAM PATIENTS
The National Heart, Lung, and Blood Institute (NHLBI) is funding a national Registry of patients with LAM at the Cleveland Clinic Foundation. Participation is entirely voluntary, but all women with LAM are encouraged to participate in this important project. Each questionnaire is a valuable piece of research material in itself. The Registry has the potential to become one of the more valuable tools that the medical community has to acquire the data needed to find answers for LAM. Participants will be interviewed and evaluated and the results of pulmonary function testing, x-rays, biopsies, and standard questionnaires will be collected by registry investigators. Patients will not be identified by name in the reports. The Registry is designed to collect information that is part of the patient's routine evaluation and care. Medical expenses will not be paid by the Registry, but the costs will likely be covered by the patient's medical care coverage. The Registry does not dictate any aspect of clinical care, and involvement will not affect treatment or management decisions of the participant's personal physician. LAM patients may contact one of the following centers: Cleveland Clinic Foundation, Cleveland, Ohio (216-445-5765) Mayo Clinic, Rochester, Minnesota (507-284-2447) The National Institutes of Health, Bethesda, Maryland (301-402-4336) New England Medical Center, Boston, Massachusetts (617-636-5871) National Jewish Medical and Research Center, Denver, Colorado (303-398-1621) Stanford University, Stanford, California (650-723-5470) Patients who are followed by doctors outside these centers can also be entered into the Registry. Once a patient enrolls, information will be gathered annually for up to four years. It is important to note that this Registry does not replace the ongoing NIH LAM research protocol in which many LAM patients have been participating. The NIH LAM research protocol is a separate project. Eligible LAM patients may participate in both the NIH LAM protocol and the LAM Registry. Information gathered through the Registry will be complementary to the insights gained from the NIH LAM research protocol. The Registry will serve as a comprehensive database of women with LAM in the U.S. and Canada.
INTRAMURAL RESEARCH
LAM research is being conducted presently through the Intramural Research Program at the National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH). The Program is headed by Dr. Joel Moss.