RecruitingNCT03193892

A National Registry on Chinese Patients With Lymphangioleiomyomatosis

A National Registry on Clinical Manifestations, Genetics, Interventions, and Outcomes in Chinese Patients With Lymphangioleiomyomatosis (LAM-CHINA)

Sponsor

Peking Union Medical College Hospital

Enrollment

1,500 participants

Start Date

Jan 1, 2017

Study Type

OBSERVATIONAL

Conditions

Pulmonary Function

Summary

Pulmonary lymphangioleiomyomatosis (LAM), a disease characterized by diffuse cystic changes in the lung, is a rare disorder that affects almost exclusively women. The main objectives of this study are to accurately evaluate the prevalence of LAM, the status of disease, the diagnosis and treatment, the quality of care, and the health related outcomes in China.

Eligibility

Sex: FEMALE

Inclusion Criteria3

Gender: female.
Age: no limitation.
Diagnosis meets one of the following criteria, (1) definite or probable diagnosis of LAM based on ATS/JRS and ERS criteria. (2) Investigators recommend including of the patient.

Exclusion Criteria5

Suspected LAM patients without other supporting evidence for LAM diagnosis.
No diffuse cystic lesions in the lung.
Patients with bilateral cystic lung lesions but the LAM diagnosis cannot be established.
Without signed informed consent.
Difficult to follow up.