The Swiss Interstitial Lung Disease (ILD) Cohort, established in 2016, is a national, multicenter, prospective longitudinal study designed to advance research in interstitial lung diseases in Switzerland and beyond.
The cohort integrates standardized clinical data, imaging, and biosamples collected across leading Swiss centers, providing a comprehensive platform for clinical, translational, and multi-omics research.
What the cohort includes
- Clinical data: diagnosis, comorbidities, treatments, and outcomes
- Imaging: high-resolution CT (HRCT) for disease characterization
- Lung function: longitudinal functional assessment of disease extent and course
- Biobank: e.g. blood, bronchoalveolar lavage (BAL), and lung tissue samples
Key strengths
- Longitudinal follow-up of ILD patients in real-world clinical settings
- Nationwide collaboration across specialized ILD centers and international collaborations
- Integrated clinical and biological data enabling translational and multi-omics research
The cohort in numbers today
- 550+ patients
- 1400+ visits
- 2000+ biosamples
Despite increased recognition of fibrotic interstitial lung diseases (ILDs), such as idiopathic pulmonary fibrosis (IPF), detailed understanding of disease progression and comprehensive patient data remain limited in Switzerland. To address this gap, we established a thoroughly characterized national cohort of ILD patients, including those with fibrotic ILD. This cohort facilitates high-quality research into disease mechanisms, diagnostics, treatment effectiveness, and patient outcomes over time.
Our prospective observational study enrolls adult patients diagnosed with fibrotic ILD, those receiving anti-fibrotic therapies, and individuals assessed via multidisciplinary discussions (MDD). Participants also serve as a reference group for broader ILD research initiatives.
We collect clinical data and biological samples while ensuring patient privacy through robust pseudonymization practices. Retrospective and prospective patient data—including clinical symptoms, diagnostic details, laboratory results, treatment histories, pulmonary function, physical examinations, demographic information, and chest CT scans—are systematically gathered and securely stored at the Institute of Social and Preventive Medicine (ISPM) in Bern.
To better understand individual therapeutic responses, we analyze clinical progression longitudinally. Biological samples such as blood, bronchoalveolar lavage (BAL) fluid, and other biospecimens are collected and stored across multiple accredited biobanking sites.