A new international registry gives hope for children with bronchiectasis

Background

While doctors are learning more about bronchiectasis in adults, there has been very little reliable information about how it affects children. This has made it harder to diagnose the condition early and to provide the best care.

To help change this, researchers have created the first international registry focused on children with bronchiectasis. A registry is a secure database that collects health information from patients.

By sharing information across countries, doctors and researchers can understand the condition better and work together to improve care.

What did the study look at?

The registry is part of Child-BEAR-Net, an ERS Clinical Research Collaboration that brings together researchers, doctors and families across countries to study and improve care for children with bronchiectasis.

The first analysis used information from children and young people under 18 years old from eight countries: Australia, South Africa, Greece, Italy, Spain, Albania, Turkey and Ukraine. Researchers looked at their health, the causes of their condition, how it was managed, and whether international standards of care were being met.

What do the results show?

This first study shows that it is possible to collect the same type of information across very different countries and health systems. The registry is already providing new insights into children’s health and care.

Key findings include:

• 408 children were included, with the average age of diagnosis being 6 years
• The most common causes were serious infections, problems with the immune system and genetic conditions
• Many children also had other health issues, such as asthma, ear, nose and throat conditions or airway problems
• In the past year, about 2 in 5 children had three or more flare-ups, and around half needed hospital care
• More than 1 in 4 brought up phlegm every day
• Most children had normal lung function, but this varied greatly between countries
• The types of bacteria found in the lungs and the treatments used also differed widely between regions
• Fewer than half had seen a children’s physiotherapist in the previous year, despite international recommendations

The registry also highlights the impact of bronchiectasis on children’s daily lives. Many developed their first symptoms, such as a daily wet cough, early in childhood. Some experienced long delays before getting a diagnosis. For many families, the condition caused repeated hospital stays, missed school and reduced quality of life.

Why is this important?

These first results show that bronchiectasis in children is a serious condition that often causes repeated illness and hospital visits. The findings also reveal big differences between countries in diagnosis, treatment and quality of care. This shows an urgent need to improve and make care more equal so that children everywhere have the best chance of staying healthy.

What happens next?

The registry will continue to grow, with more children and more countries expected to join. This will allow researchers to:

• understand the condition better
• identify which treatments work best
• explore why care differs between countries
• develop strategies to prevent flare-ups and hospital admissions

By working together internationally, researchers hope to give every child with bronchiectasis the best chance of a healthy future.

Read the full paper: First results from the international paediatric bronchiectasis registry (Child-BEAR-Net Registry) describing multicountry variations in childhood bronchiectasis and its management: a multicentre, cross-sectional study.

Further reading: Diagnosing and treating non-cystic fibrosis bronchiectasis in children and young people – European Lung Foundation