A National Registry on Chinese Patients With Lymphangioleiomyomatosis

Launched by PEKING UNION MEDICAL COLLEGE HOSPITAL · Jun 18, 2017

Keywords

ClinConnect Summary

This clinical trial is looking into a rare lung disease called pulmonary lymphangioleiomyomatosis (LAM), which primarily affects women. The study aims to gather important information about how common LAM is in China, how it is diagnosed and treated, and the overall quality of care and health outcomes for patients. By understanding these factors, researchers hope to improve the care and support available for women living with this condition.

To participate in this trial, you must be a female diagnosed with LAM, either definitely or probably, according to specific guidelines. There are no age restrictions, but participants must have a confirmed diagnosis and be able to give their informed consent. Those without clear evidence of LAM or who may be difficult to follow up with will not be eligible. If you join, you can expect to contribute valuable information that could help improve the understanding and treatment of LAM in the future.

Gender

FEMALE

Eligibility criteria

• Inclusion Criteria:
• • 1. Gender: female.
• • 2. Age: no limitation.
• • 3. 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 Criteria:
• • 1. Suspected LAM patients without other supporting evidence for LAM diagnosis.
• • 2. No diffuse cystic lesions in the lung.
• • 3. Patients with bilateral cystic lung lesions but the LAM diagnosis cannot be established.
• • 4. Without signed informed consent.
• • 5. Difficult to follow up.