Registry

Overview

A central component of the ChildBREATHE programme is the establishment of a national research registry and biobank for children and adolescents with bronchiectasis in Denmark.

The registry integrates clinical data, patient-reported outcomes, microbiological findings, and immunological analyses, enabling comprehensive and longitudinal assessment of disease characteristics and progression.

Data collection

Data are collected within routine clinical care pathways at participating centres and include:

• demographic and clinical characteristics
• lung function and radiological assessments
• microbiological data, including airway pathogens
• immunological markers, including inflammatory profiles
• patient-reported outcomes and quality of life measures
• information on exacerbations and treatment

Biological samples such as bronchoalveolar lavage, blood, and respiratory specimens are collected when clinically indicated and stored in the associated biobank.

Longitudinal follow-up

The registry is designed to support longitudinal follow-up, allowing evaluation of disease trajectories, treatment responses, and long-term outcomes in a national cohort.

This structure enables investigation of prognostic markers and supports development of more individualised approaches to management.

Future research platform

Following the active research phase (2025–2040), the registry and biobank will continue as a national research infrastructure.

The platform is intended to support future approved research projects, including multicentre studies and collaborations with national and international partners.