A National Registry on Chinese Patients With Lymphangioleiomyomatosis

  • STATUS
    Recruiting
  • End date
    Oct 1, 2026
  • participants needed
    1500
  • sponsor
    Peking Union Medical College Hospital
Updated on 24 February 2022

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.

Description

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. This is a register study lasting 4 years, aims to raise 800 subjects. Primary endpoint is the annual change of forced expiratory volume in the first second (FEV1) and forced vital capacity (FVC) in pulmonary function tests.

Details
Condition Pulmonary Function
Clinical Study IdentifierNCT03193892
SponsorPeking Union Medical College Hospital
Last Modified on24 February 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

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 Criteria

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
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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