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| Name | Class |
|---|---|
| Capital Institute of Pediatrics, China | OTHER |
| Shengjing Hospital | OTHER |
| Xinhua Hospital, Shanghai Jiao Tong University School of Medicine | OTHER |
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This study is a multicenter, prospective cohort study of patients diagnosed with respiratory monogenic diseases, the clinical information of recruited patients, including clinical manifestations, lung function, chest imaging, quality of life and other indicators, will be followed for 5 years.
All new cases of respiratory monogenic diseases 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 5 years: clinical manifestations, lung function, chest imaging (once per year), gene test, quality of life and other indicators.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Monogenic diseases cases |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Other | observation |
|
| Measure | Description | Time Frame |
|---|---|---|
| Change from baseline in lung function on the spirometry | forced expiratory volume at one second (FEV1) in Liter | 1 year later |
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Inclusion Criteria:
Exclusion Criteria:
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Children who was confirmed diagnosis as respiratory monogenic diseases at the certain hospitals (sponsor and collaborators)
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Kunling Shen, MD,PhD | Contact | 861059616308 | kunlingshen1717@163.com | |
| Baoping Xu, MD,PhD | Contact | 861059616308 | xubaopingbch@163.com |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Beijing Children's hospital | Recruiting | Beijing | Beijing Municipality | 100045 | China |
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| ID | Term |
|---|---|
| D004194 | Disease |
| ID | Term |
|---|---|
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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| The Children's Hospital of Zhejiang University School of Medicine |
| OTHER |
| Children's Hospital of Chongqing Medical University | OTHER |
| The first clinical college of Guangzhou medical university | UNKNOWN |
| Guangzhou Women and Children's Medical Center | OTHER |
| Yuying Children's Hospital of Wenzhou Medical University | OTHER |
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