Study on Interstitial Lung Diseases Across All Ages Including Family Members

What this Trial Is About

Researchers are studying children and adults with idiopathic interstitial pneumonias, progressive fibrosing interstitial pneumonias, interstitial pneumonia linked to Scleroderma, and patients with mutations in telomere-related genes. This national, observational, longitudinal, multicenter study aims to gather consistent clinical data from these patients and their relatives, whether or not they carry the mutations. The study will last about 10 years, including 5 years of participant enrollment and 5 years of follow-up plus data analysis. The study collects medical data retrospectively and prospectively at specific intervals at 6 months to 1 year after enrollment, then at least once yearly for patients up to 5 years, and for their relatives at inclusion and 5 years later. Participants will complete questionnaires during regular follow-up visits or through a secure online system. Various clinical assessments will be recorded, including respiratory exams, imaging scans, biological samples, lung function tests, cardiac evaluations, skin and fertility assessments, bone density, and treatments. During the study, participants will undergo comprehensive evaluations such as chest scans, echocardiography, bronchoscopy, lung biopsies when available, and laboratory tests. Data on genetics, environmental factors, biomarkers, immune and liver function, cancer history, and more will also be collected. These assessments will occur at regular intervals up to 5 years for patients and relatives. This extensive monitoring helps researchers understand disease progression and related factors over time.

Interstitial Lung Disease: A Study From Infancy to Elderly Including Relatives