Understanding lung fibrosis across all ages and families

Plain-English translation of NCT06036719 on ClinicalTrials.gov ↗ · Source last updated February 2026 · Translation generated June 2026 · How we translate trials

What is this trial?

This is a long-term study that follows people with different types of lung fibrosis—scarring of the lungs—along with their family members. Researchers want to gather consistent medical information from thousands of participants over 10 years to understand how these lung conditions develop, progress, and run in families. By tracking this information carefully, they hope to find patterns that could help improve diagnosis and treatment in the future.

Lung fibrosis diseases are complex and can vary greatly from person to person, making them hard to study and treat. This research aims to create a comprehensive picture of how these conditions affect different age groups and families, particularly those with genetic mutations linked to lung health, so doctors can eventually develop better ways to slow or prevent disease progression.

Do you qualify?

You likely qualify if…

you have been diagnosed with idiopathic interstitial pneumonia or another type of progressive lung fibrosis
you have systemic sclerosis (scleroderma) with lung involvement affecting at least 10% of your lungs
you are a first-degree relative (parent, child, or sibling) of someone with a telomere gene mutation
your lung disease shows clear signs of worsening on breathing tests or CT scans over the past two years
you are willing to provide written consent and share your medical information

You likely don't qualify if…

your lung disease is only explained by a pulmonary embolism, heart failure, or lower respiratory infection
you are unable or unwilling to provide written informed consent
you do not have confirmed diagnosis of one of the specific interstitial lung diseases studied

What participation looks like

If you join, you'll be asked to share your medical information during your regular doctor visits and through a secure online questionnaire. After enrollment, you'll have check-ins at 6 months to 1 year, then at least once yearly for up to 5 years (relatives may have less frequent follow-ups). The study is observational, meaning researchers will track your health data over time—you won't be testing a new drug, but rather contributing to a large database that could help future patients.

AI-generated summary from trial data · Jun 23, 2026 · Not medical advice

Understanding lung fibrosis across all ages and families

What is this trial?

Do you qualify?

What participation looks like

Trial locations