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By mean of registry of newly diagnosed Chinese IPF patients from more than 15 sites, this study aims to build IPF prospective cohort, set up normative clinical database and a biological specimen bank, and examine the clinical characteristics of newly diagnosed Chinese IPF patients, as well as the nature history, prognosis, comorbidities and complications of IPF patients in China, the current treatment pattern, burden of illness, and quality of life of Chinese IPF patients.
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| Measure | Description | Time Frame |
|---|---|---|
| Demographic and clinical characteristic of newly diagnosed Chinese IPF patients | Data analyses will be mainly descriptive. | up to 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| Mortality in Chinese patients with IPF | Mortality will be showed as percentage. | up to 5 years |
| Cause of death in Chinese patients with IPF | Cause of death: a. IPF-related: i. Respiratory failure: Pulmonary failure leads to impaired gas exchange, i.e. hypoxemia and/or hypercapnia ii. Acute exacerbation of IPF (as defined below) iii. Other aspects related to IPF (please specify); b. Concomitant conditions: i. Coronary heart disease ii. Cerebrovascular disease iii. Pneumonia/respiratory tract infection iv. Pulmonary embolism v. Pulmonary hypertension or pulmonary hypertension/right heart failure vi. Lung cancer; c. Other causes; d. Unknown. Cause of death will be showed as categorical variable, and the counts and percentile ratios will be statistically counted. |
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Inclusion Criteria:
Exclusion Criteria:
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Chinese newly diagnosed IPF patients
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Huaping Dai | Recruiting | Beijing | Beijing Municipality | 100029 | China |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 40087606 | Derived | Yang X, Wang H, Liu A, Ni Y, Wang J, Han Y, Xie B, Geng J, Ren Y, Zhang R, Liu M, Dai H. Evaluation of respiratory muscle dysfunction in patients with idiopathic pulmonary fibrosis: a prospective observational study with magnetic resonance imaging. BMC Pulm Med. 2025 Mar 14;25(1):118. doi: 10.1186/s12890-025-03572-6. | |
| 33177132 | Derived |
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| ID | Term |
|---|---|
| D054990 | Idiopathic Pulmonary Fibrosis |
| ID | Term |
|---|---|
| D011658 | Pulmonary Fibrosis |
| D017563 | Lung Diseases, Interstitial |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| up to 5 years |
| Progression-free survival in Chinese patients with IPF | Patients without the following events:
The unit of progression-free survival is day. | up to 5 years |
| Description of the acute exacerbations in Chinese patients with IPF | Acute exacerbation of IPF (AE-IPF)
The incidence of the acute exacerbation will be showed as percentage. | up to 5 years |
| Xie B, Ren Y, Geng J, He X, Ban C, Wang S, Jiang D, Luo S, Chen Q, Liu M, Feng R, Zhao L, Dai H, Wang C. Idiopathic Pulmonary Fibrosis Registry China study (PORTRAY): protocol for a prospective, multicentre registry study. BMJ Open. 2020 Nov 11;10(11):e036809. doi: 10.1136/bmjopen-2020-036809. |