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Lymphangioleiomyomatosis (LAM) Registry


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Not Enrolling
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Leiomyomatosis

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Trial Information

Lymphangioleiomyomatosis (LAM) Registry


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.

Inclusion 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.

Type of Study:

Observational

Study Design:

N/A

Authority:

United States: Federal Government

Study ID:

990020

NCT ID:

NCT00001869

Start Date:

December 1998

Completion Date:

April 2003

Related Keywords:

  • Leiomyomatosis
  • Progesterone
  • Pulmonary Function Tests
  • Pneumothorax
  • Oopherectomy
  • High Resolution CT
  • Tuberous Sclerosis Complex
  • Lymphangioleiomyomatosis (LAM)
  • Leiomyomatosis
  • Lymphangioleiomyomatosis

Name

Location

National Heart, Lung and Blood Institute (NHLBI)Bethesda, Maryland  20892