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. For more information, please visit SwissRDL Registry for Idiopathic Interstitial Pneumonias (IIP) and SwissRDL Lung Registry.
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. In Bern, samples are preserved at Biobank Bern, a central facility jointly operated by Inselspital and the University of Bern.
To maintain high scientific and ethical standards, the Clinical Trial Unit (CTU) Bern oversees quality control and adherence to study protocols.