European Management Platform for Childhood Interstitial Lung Diseases chILD-EU Register and Biobank Observational Study

What this Trial Is About

This research aims to create a common European database and biobank focused on childhood interstitial lung diseases (chILD). It seeks to continuously assess and apply guidelines and treatment protocols, establish a large observational cohort of chILD patients, and evaluate the value of various clinical outcomes. The study also aims to assess treatment variations and provide data to support future clinical trial protocols. The project will adapt existing national data collection programs from France, Germany, and the UK into a pan-European web-based database and biobank compatible with similar efforts in the United States. Regular meetings of an expert Standards Working Group will establish diagnostic pathways, including protocols for clinical data gathering, blood tests, imaging, and pathology. An international panel will review diagnoses for quality control, and follow-up protocols will generate natural history data. Recruitment will be Europe-wide, with independent review of diagnoses and ongoing monitoring of local clinical decisions and outcomes. Participants will be part of a carefully characterized chILD cohort, with clinical, imaging, lung function, histopathology, serum markers, and genetic data collected and assessed. The study will investigate reproducibility and variability of data, including training effects on image reading. Treatment practices and outcomes will be analyzed across subjects to inform future trials. The primary outcome measure is the number of subjects with specific diagnoses over ten years, with survival also tracked for the same period.

European Management Platform for Childhood Interstitial Lung Diseases - chILD-EU Register and Biobank