Novel Pulmonary Cyst Characteristics Associated with the Diffusing Capacity of the Lung in Lymphangioleiomyomatosis: A Cross-Sectional Clinical Trial.
Brianna P Matthew, Alfredo Lebron, Yun-Ching Chen...
https://pubmed.ncbi.nlm.nih.gov/36930738Actively Recruiting
Age: 16Years - 100Years
All Genders
ID00001465
Characterization of the Pathogenesis of Lymphangioleiomyomatosis (LAM)
Led by National Heart, Lung, and Blood Institute (NHLBI) · Updated on 2026-06-05
2000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Pulmonary lymphangioleiomyomatosis (LAM) is a severe lung disease mainly affecting women of childbearing age, with no currently proven effective treatment and a variable prognosis. This research aims to understand the disease processes at cellular and molecular levels by identifying proteins and genes involved in lung damage, to help develop better therapies in the future. The study is observational and focuses on defining the clinical course and pathogenesis of LAM. Participants diagnosed with LAM may be evaluated every six months or as needed for research purposes. The study uses advanced imaging technology, such as the Toshiba Aquilion ONE CT system, which provides detailed whole organ volume images with reduced radiation exposure to enhance safety. Pregnant or nursing women may participate but will not undergo procedures involving significant risk or radiation during pregnancy or nursing. Participants will undergo various assessments including imaging, lung function tests, and exercise capacity evaluations, except during pregnancy or nursing when some tests are avoided. The primary measurement is to define the clinical progression and cellular causes of LAM. Follow-up evaluations occur regularly to monitor disease status, and data collected will contribute to understanding and potentially improving care for people with LAM.
CONDITIONS
Brief Title
Study of the Disease Process of Lymphangioleiomyomatosis
Who Can Participate
Age: 16Years - 100Years
All Genders
Eligibility Criteria
You may qualify if you...
- Diagnosis of LAM confirmed by lung biopsy or chest x-ray/computed axial tomography consistent with LAM
- Patients with tuberous sclerosis complex (TSC) and pulmonary LAM are included
- Normal non-smokers who have not smoked for at least 1 year and have no lung or systemic disease may be included as controls
- Normal smokers with no lung or systemic disease who have smoked for at least 1 year and have normal chest x-ray and lung function tests may be included as controls
- Pregnant or nursing women may participate but will not undergo procedures with greater than minimal risk during pregnancy or nursing
You will not qualify if you...
- Age younger than 16 years
- Advanced pulmonary or systemic illness posing significant risk for study procedures
- Use of continuous oxygen excludes participation in exercise tests but not in other study evaluations
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Diagnostic Evaluation
Duration - Ongoing throughout the study
Participants undergo imaging and other assessments to evaluate lung condition and disease characteristics.
Visits every six months or as deemed necessary for research
Long-term Monitoring
Duration - Indefinite duration throughout the study period
Participants with lymphangioleiomyomatosis are observed over time to define the clinical course and study disease progression.
Regular follow-up visits every six months or as needed
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
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Research Team
T
Tatyana A Worthy, R.N.
J
Joel Moss, M.D.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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Published Research Related To This Trial
Ultra-Small Lung Cysts Impair Diffusion Without Obstructing Air Flow in Lymphangioleiomyomatosis.
Brianna P Matthew, Amir M Hasani, Yun-Ching Chen...
https://pubmed.ncbi.nlm.nih.gov/33549601Chest CT Scan at Radiation Dose of a Posteroanterior and Lateral Chest Radiograph Series: A Proof of Principle in Lymphangioleiomyomatosis.
Eileen Hu-Wang, John L Schuzer, Shirley Rollison...
https://pubmed.ncbi.nlm.nih.gov/30291925