Clinical Trial: Registry Study on Primary Ciliary Dyskinesia in Chinese Children

Study Status: Not yet recruiting
Recruit Status: Not yet recruiting
Study Type: Observational

Official Title: Registry Study on Primary Ciliary Dyskinesia in Chinese children-a Multicenter, Prospective Cohort Study

Brief Summary: This study is a multicenter, prospective cohort study of patients diagnosed with primary ciliary dyskinesia, the clinical information of recruited patients, including clinical manifestations, lung function, chest imaging, quality of life and other indicators, will be followed for 10 years.

Detailed Summary: All new cases of primary ciliary dyskinesia which was confirmed or diagnosed at each center from the beginning of the study are made the investigation of the clinical manifestations and specific tests by the standard diagnostic process.Then all the patients' following clinical data will be followed for 10 years (once per six month): clinical manifestations, lung function, chest imaging (once per year), quality of life and other indicators.
Sponsor: Beijing Children's Hospital

Current Primary Outcome: Change from baseline in lung function on the spirometry [ Time Frame: 10 years ]

forced expiratory volume at one second (FEV1) in Liter


Original Primary Outcome: Same as current

Current Secondary Outcome:

Original Secondary Outcome:

Information By: Beijing Children's Hospital

Dates:
Date Received: March 3, 2016
Date Started: May 2016
Date Completion: July 2030
Last Updated: March 5, 2016
Last Verified: March 2016