National Lymphangioleiomyomatosis Registry, France

What this Trial Is About

Researchers are gathering detailed information about lymphangioleiomyomatosis (LAM), a rare lung disease that mainly affects women, through a national registry in France. The study aims to understand how common LAM is, its different forms, and how it progresses over time. This registry will also evaluate how patients are managed within specialized centers for rare lung diseases in France, helping to improve knowledge about the disease's natural course and variability in severity. The study collects data from various sources to ensure thoroughness and involves setting up a prospective patient group based on the registry. Medical details, especially about lung function progression, will be recorded. Data collection is done by a research assistant and coordinated by a public health and epidemiology department in Lyon Hospitals. This observational study does not involve any experimental treatments or interventions. Participants diagnosed or hospitalized for LAM since January 1, 2008, will have their medical information recorded and tracked over time. Researchers will monitor the number of cases over a period of four years, assess where cases are located, and track progression-free survival during this time. This study helps provide valuable epidemiological data and prepares the way for future clinical trials. Participants contribute by allowing their medical data to be included and followed in the registry, with no additional treatment or procedures required.

National Lymphangioleiomyomatosis Registry, France