Registry following Taiwanese people with fibrotic interstitial lung disease over time
Records long-term health and lung tests in adults with scarring lung disease.
Plain-language title generated from the registry record
Registry title: Taiwan Interstitial Lung Disease Multi-center Investigation and Registry
Key facts
- Where
- Taichung, TaiwanSee the site
Where in Taiwan
- Taichung Veterans General HospitalTaichung, TaiwanTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Taichung Veterans General Hospital
- Trial code
- NCT06476470
- Record updated
- 26 June 2024
- Original description
The Taiwan Interstitial Lung Disease (ILD) Multi-center Investigation and Registry aims to evaluate the long-term outcomes of patients with fibrotic interstitial lung disease. This prospective observational registry will collect comprehensive clinical data from multiple centers, including epidemiological information, comorbidities, questionnaire results, routine blood tests, biochemical tests, pulmonary function tests, echocardiograms, and cardiopulmonary exercise tests (CPET), all following a standardized protocol.Read full original descriptionShow less
A Prospective Multi-center Registry for Fibrotic Lung Disease, Focusing on Clinical Phenotype, Physical Parameters, Image Analysis, and Precision Medicine in Taiwan
The Taiwan Interstitial Lung Disease (ILD) Multi-center Investigation and Registry aims to evaluate the long-term outcomes of patients with fibrotic interstitial lung disease. This prospective observational registry will collect comprehensive clinical data from multiple centers, including epidemiological information, comorbidities, questionnaire results, routine blood tests, biochemical tests, pulmonary function tests, echocardiograms, and cardiopulmonary exercise tests (CPET), all following a standardized protocol.
Key components of the registry include annual HRCT scans, annual CPETs, biobank blood samples, and biannual echocardiograms and pulmonary function tests.
The main questions the registry aims to answer are:
1. Differences in all-cause mortality among ILD patients of different etiologies. 2. Differences in the annual risk of acute exacerbation among ILD patients of different etiologies. 3. Effectiveness of current anti-fibrotic drugs in treating IPF and ILD of different etiologies. 4. Predictive ability of HRCT imaging features for mortality risk in ILD patients. 5. Impact of comorbidities on the mortality risk of ILD patients. 6. Predictive ability of biomarkers for disease progression and mortality.
Inclusion: Aged over 18 years old; Diagnosed as ILD by a pulmonologist, rheumatologist or radiologist; Various casue of ILD, including Idiopathic pulmonary fibrosis (IPF), Connective tissue disease-associated interstitial lung disease (CTD-ILD), Unclassifed ILD, drug-induced ILD, lymphangioleiomyomatosis (LAM), and sarcoidosis-associated ILD.
Exclusion: Failure to express informed consent in person; Under 18 years of age.