Tracking lung disease in newly diagnosed cystic fibrosis children

Plain-English translation of NCT02270476 on ClinicalTrials.gov ↗ · Source last updated November 2023 · Translation generated June 2026 · How we translate trials

What is this trial?

This is a long-term research study that tracks how cystic fibrosis lung disease develops in children diagnosed early (through newborn screening or by 4 months of age) compared to those diagnosed later in childhood. Researchers will use routine medical visits, imaging, breathing tests, and check-in calls to understand the natural course of the disease and how early treatment may help protect the lungs.

Very little is known about how cystic fibrosis lung disease begins and progresses in young children, or what factors influence its course. By following newly diagnosed children over time, researchers hope to gain insights that could help doctors better understand and potentially improve lung health outcomes.

Do you qualify?

You likely qualify if…

you have a confirmed diagnosis of cystic fibrosis (based on sweat chloride testing, genetic testing, or electrical measurements in the airway)
your child was diagnosed with cystic fibrosis in the first 4 months of life (early diagnosed group) or later in childhood due to symptoms (late diagnosed group)
your child's diagnosis was made after January 1, 2006
you and your family are willing to participate in the full study, including regular visits and monthly telephone check-ins

You likely don't qualify if…

your child was born before 30 weeks of gestation
your child needed prolonged breathing machine support (mechanical ventilation) in the first 3 months of life
your child has a serious medical condition other than cystic fibrosis that would interfere with study participation
your child has had major surgery (except for bowel-related complications of cystic fibrosis) or significant organ dysfunction unrelated to the cystic fibrosis
your child has a chronic lung disease other than cystic fibrosis, or a history of severe reactions to sedation medications

What participation looks like

Your family would participate in routine annual medical visits at the study center, which include breathing tests, chest imaging (MRI), and collection of samples. You would also receive monthly phone calls from a study nurse asking about your child's breathing symptoms, and every three months complete a questionnaire about your child's quality of life. Some families may be asked to participate in an optional bronchoscopy procedure (a camera examination of the airways) with collection of fluid samples. The study continues for as long as your family wants to participate.

AI-generated summary from trial data · Jun 8, 2026 · Not medical advice

Trial locations(4 sites)

Germany

University Children's Hospital Heidelberg, Cystic Fibrosis Centre, Heidelberg, Baden-Wurttemberg

University Hospital Gießen and Marburg GmbH, Giessen, Hesse

Medizinische Hochschule Hannover, Hanover, Lower Saxony

University Children's Hospital Schleswig-Holstein, Lübeck, Schleswig-Holstein

Tracking lung disease in newly diagnosed cystic fibrosis children

What is this trial?

Do you qualify?

What participation looks like

Trial locations(4 sites)

Contact the research team directly

Interested in joining?