Official Record of Patients Diagnosed With Lymphangioleiomyomatosis (LAM)

Launched by NATIONAL HEART, LUNG, AND BLOOD INSTITUTE (NHLBI) · Nov 3, 1999

Keywords

ClinConnect Summary

LAM is a rare disease that predominantly affects women of child-bearing age. To study in more detail this rare disease, this multi-center project will establish a registry of persons with LAM. By combining data from 6 centers and outside physicians, this study may yield valuable information regarding the rate of decline in pulmonary function and quality of life in individuals with LAM. These patients will be followed over a five-year period. Tissue collected from study participants may facilitate future studies into the molecular basis of LAM.

Gender

ALL

Eligibility criteria

• • Informed consent must be obtained from the patient.
• • Patients must be female.
• • Patients must be age 18 or older.
• • Patients with prevalent and incident cases are eligible.
• • Patients with the presence or absence of underlying diagnosis or evidence of Tuberous Sclerosis Complex (TSC) are eligible.
• Patients must have a diagnosis of LAM confirmed by any of the following criteria:
• • Lung biopsy (transbronchial, surgical, transthoracic) judged to be diagnostic by the Tissue Core pathologists;
• • OR
• • Biopsy of lymph node or other mass judged to be diagnostic by the Tissue Core pathologists;
• • OR
• • High resolution CT scan of the chest which is judged to be diagnostic of LAM with a high degree of certainty by all three of the expert radiologists making up the Imaging Core.
• • Patients may be enrolled in other protocols.