Observational study on interstitial lung diseases from infancy to elderly

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to collect and analyze clinical data from patients of all ages suffering from idiopathic interstitial pneumonias and related chronic fibrosing interstitial lung diseases. It will include both retrospective and prospective data collection over a period of approximately 10 years, with 5 years dedicated to participant enrollment and another 5 years for follow-up and data analysis. The study will involve patients with confirmed diagnoses and their relatives, regardless of genetic mutations. Participants will be informed about the study and will provide written consent before enrollment.

Why it matters

Who can join: the full rules

Inclusion Criteria:

Confirmed diagnosis of IIP established based on clinical, radiological, or functional criteria.

Confirmed diagnosis of non-IPF progressive fibrotic interstitial lung disease (PF-ILD) with fibrosis ≥ 10% on CT scan, disease worsening not related to pulmonary embolism, decompensated heart failure, or lower respiratory tract infection, and disease progression despite "appropriate management" evaluated over a period of up to 24 months:

* A relative decline in Forced Vital Capacity (FVC) of at least 10% from predicted value, with or without clinical deterioration, or
* A combination of at least 2 of the following criteria: a relative decline in FVC between 5% and 10% from predicted value, worsening respiratory symptoms, increased extent of pulmonary fibrosis on thoracic CT scan.

Confirmed diagnosis of Systemic Sclerosis-associated Interstitial Lung Disease (SSc-ILD) (American College of Rheumatology criteria), with a total score ≥ 9 and disease extent involving ≥ 10% of the lungs (defined by reticular abnormalities, honeycombing, and ground-glass opacities) on high-resolution CT (HRCT) scan.

For relatives: First degree relatives of patients carrying a mutation in TERT, TERC, RTEL1, TINF2, DKC1, PARN genes, and other telomere related genes that may be described in the future and included.

Where it's running

• RaDiCo-ILD2
  Paris, Île-de-France Region, France Recruiting

Study contacts

• Principal investigator: Vincent Cottin, Pr — Centre National de Référence des maladies pulmonaires rares
• Study coordinator: Vincent Cottin, Pr
• Email: vincent.cottin@chu-lyon.fr
• Phone: (33) 4 27 85 77 00

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Home-based pulmonary rehabilitation for interstitial lung disease

  This study tests a 6-week home-based pulmonary rehabilitation program to see if it improves breathing, exercise ability, and quality of life for people with fibrotic interstitial lung disease in India.

  Recruiting Post Graduate Institute of Medical Education and Research, Chandigarh · Chandigarh, Chandigarh · NCT07830602

• Photon-counting CT vs standard HRCT to help diagnose IPF and other ILDs

  This study tests whether photon-counting CT can improve identifying IPF and other ILDs compared with standard HRCT for patients discussed in multidisciplinary teams.

  Recruiting Istituto Clinico Humanitas · Rozzano, Italy · NCT07790614

• Nerandomilast for fibrosing interstitial lung disease at risk of progression

  This trial tests whether nerandomilast can help adults with fibrosing interstitial lung disease who are at risk of their disease getting worse.

  Recruiting at 7 sites Phase 3 Boehringer Ingelheim · Birmingham, Alabama and 161 other locations · NCT07540988

• Nerandomilast to slow lung changes in people with a family history of pulmonary fibrosis

  This trial tests whether taking nerandomilast can slow early lung scarring in people aged 40 and older who have a first-degree relative with pulmonary fibrosis and CT evidence of interstitial lung abnormalities.

  Recruiting at 52 sites Phase 3 Boehringer Ingelheim · Los Angeles, California and 54 other locations · NCT07201922

• Ultra‑high‑resolution CT to look for lung and heart damage in progressive interstitial lung disease

  This project will use advanced multidimensional CT scans to see if one noninvasive test can measure both lung fibrosis and early heart involvement in adults with progressive or long‑standing interstitial lung disease.

  Recruiting IRCCS San Raffaele · Milan · NCT06537934

• Evaluating a new CAR T cell therapy for systemic sclerosis

  This study is testing a new CAR T cell therapy to see if it can help people with systemic sclerosis feel better and manage their symptoms.

  Recruiting at 10 sites Phase 2/3 Cabaletta Bio · New Haven, Connecticut and 9 other locations · NCT06328777

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.