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| Name | Class |
|---|---|
| Ruijin Hospital | OTHER |
| Shanghai Zhongshan Hospital | OTHER |
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The investigators meant to establish a multi-centered bronchiectasis patient registry for Chinese bronchiectasis patients. This would be the first bronchiectasis registry in China. Patients with all kinds of bronchiectasis would be enrolled.
A multi-centered bronchiectasis patient registry would be founded, which will include patients from three teaching hospital (Ruijin Hospital, Zhongshan Hospital and Shanghai Pulmonary Hospital) in Shanghai at the beginning. The network will be promoted to other cities and different places in China. Patients with bronchiectasis would be enrolled and detailed information would be recorded. Follow-up of patients would provide more information on the prognosis of disease. Optimal treatment studies for the patients will be initiated one by one based on the network. The investigators are committed to promoting clinical research and education in bronchiectasis, through sharing of protocols, research idea and expertise.
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| Measure | Description | Time Frame |
|---|---|---|
| Number of patients enrolled in the registry | To establish a multi-centered bronchiectasis registry in Shanghai | 3 years |
| Measure | Description | Time Frame |
|---|---|---|
| Lung Function (FEV1, FVC, FEV1% pred, FVC% pred etc.) | Lung function would be tested by spirometry when patients visit the clinic. | recorded at baseline and re-tested every year, up to 3 years. |
| Exacerbation |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with all-cause bronchiectasis would be included, such as those with tuberculosis history and genetic disorders.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jin-Fu Xu, MD | Contact | +86-13321922898 | jfxucn@163.com |
| Name | Affiliation | Role |
|---|---|---|
| Jin-Fu Xu, MD | Shanghai Pulmonary Hospital, Shanghai, China | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Shanghai Pulmonary Hospital , Tongji University | Recruiting | Shanghai | Shanghai Municipality | 200000 | China |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 27730179 | Result | Chalmers JD, Aliberti S, Polverino E, Vendrell M, Crichton M, Loebinger M, Dimakou K, Clifton I, van der Eerden M, Rohde G, Murris-Espin M, Masefield S, Gerada E, Shteinberg M, Ringshausen F, Haworth C, Boersma W, Rademacher J, Hill AT, Aksamit T, O'Donnell A, Morgan L, Milenkovic B, Tramma L, Neves J, Menendez R, Paggiaro P, Botnaru V, Skrgat S, Wilson R, Goeminne P, De Soyza A, Welte T, Torres A, Elborn JS, Blasi F. The EMBARC European Bronchiectasis Registry: protocol for an international observational study. ERJ Open Res. 2016 Jan 20;2(1):00081-2015. doi: 10.1183/23120541.00081-2015. eCollection 2016 Jan. | |
| 36463140 |
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| ID | Term |
|---|---|
| D001987 | Bronchiectasis |
| ID | Term |
|---|---|
| D001982 | Bronchial Diseases |
| D012140 | Respiratory Tract Diseases |
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Whole blood would be drawn and stored at - 80℃
Exacerbation was defined as the use of antibiotics or even hospitalization due to the worsening of symptoms or emergence of new symptoms.
| up to 3 years |
| Aetiology | To analysis the possible cause of bronchiectasis in Shanghai, China. | at baseline |
| Microbiology | Sputum or bronchoalveolar lavage fluid culture | At least 1 year before enrollment and 3 years during the follow-up |
| Comorbidity | Comorbidity would be recorded. | At baseline and updated every year for up to 3 years |
| Quality of Life Questionnaire-Bronchiectasis | The questionnaire asks patients questions about their current state of health. It could be downloaded from the website online. | At baseline and updated once a year for 3 years |
| Bronchiectasis severity Score (BSI) | The scale is presented online. It consists of 9 items including Age, BMI(Body Mass Index), % FEV1 Predicted, Previous Hospital Admission in the past 2 years, number of exacerbations in previous year, MRC Breathlessness Score, Pseudomonas Colonisation, Colonisation with other organisms,affected lobes. 0-4 Mild Bronchiectasis. 5 - 8 Moderate Bronchiectasis. 9 + Severe Bronchiectasis. | At baseline and updated once a year for 3 years |
| E-FACED score | It consists of 6 items including exacerbation history in the past year, % FEV1 predicted, Age, Chronic colonization by Pseudomonas aeruginosa, n° of pulmonary lobes affected,and Dyspnea (measured by mMRC score) mild: 0-3 points, moderate: 4-6 points; and severe: 7-9 points | At baseline and updated once a year for 3 years |
| Mortality | 3 years |
| modified Medical Research Council (mMRC) dyspnea score |
| At baseline and updated once a year for 3 years |
| Ruijin Hospital | Recruiting | Shanghai | China |
|
| Derived |
| Gao YH, Lu HW, Mao B, Guan WJ, Song YL, Li YY, Wang DX, Wang B, Gu HY, Li W, Luo H, Wang LW, Li F, Guo FX, Zhang M, Jie ZJ, Hang JQ, Yang C, Ren T, Yuan Z, Meng QW, Jia Q, Chen Y, Chen RC, Qu JM, Xu JF. The Establishment of China Bronchiectasis Registry and Research Collaboration (BE-China): Protocol of a prospective multicenter observational study. Respir Res. 2022 Dec 3;23(1):328. doi: 10.1186/s12931-022-02254-9. |