Bronchiectasis Registries

The Children's BEAR Network is developing a collaborative bronchiectasis registry to document the incidence and prevalence of bronchiectasis, and to map the natural history of the disease. High quality data will help to answer key questions that will ultimately lead to better treatment and quality of life for those with bronchiectasis.

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In the first 3-5 years, the Child-BEAR-Net Registry aims to:

1. Evaluate the underlying aetiology, treatments and outcomes

2. Assess long-term outcomes that are important to patients, providers, and other decision-makers

3. Facilitate recruitment of patients for clinical studies 

Our subsequent longer-term aims are to:

1. Provide real-world evidence on the effectiveness of interventions

2. Time trends of aetiology, treatments and outcomes

3. Identify areas of sub-standard clinical management

4. Improve awareness of diagnosis so as to prevent the delay of diagnosis

5. Link children’s data with future adult-based registries

6. Link with registries of other diseases where bronchiectasis is common

Each country will have governance of their own registry. Country Leads are listed below.

Australia

A/Prof Stephanie Yerkovich
Queensland University of Technology, Menzies School of Health Research

Austria

Prof Ernst Eber
Medical University of Graz

Belgium

Prof Marijke Proesmans
Respiratory Paediatrics, UZ Leuven

Brazil

Prof Gilberto Fischer
University of Health Science, Hospital da Criança Santo Antonio, Brazil