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

Germany

Prof Matthias Griese
Pediatrics Hauner

Children´s Hospital, University of Munich

Greece

Prof Konstantinos Douros
“Attikon” University Hospital, National and Kapodistrian University of Athens

Israel

Dr Dario Prais
Pediatric Pulmonology Institute, 
Schneider Children’s Medical Center of Israel

Italy

Prof Fabio Midulla
Maternal Science, Sapienza University of Rome

Norway

Dr Christine Sachs-Olsen
Department of Paediatrics
Oslo University Hospital

Portugal

Dr Carolina Constant
Department of Pediatrics, Hospital de Santa Maria and Faculty of Medicine, University of Lisbon

Scotland

Dr Stefan Unger
Royal Hospital for Children and Young People

South Africa

Dr Charl Verwey
Chris Hani Baragwanath Academic Hospital, University of the Witwatersrand, South Africa

Spain

Prof Antonio Moreno Galdó
Hospital Universitari Vall d’Hebron, Universitat Autònoma de Barcelona

Switzerland

Prof Alexander Moeller
University of Zurich,
University Children’s Hospital Zurich

Turkey

Prof Bulent Karadag
Pediatric Pulmonology, Marmara University Faculty of Medicine

Ukraine

Prof Oleksandr Mazulov
National Pirogov Memorial Medical University, Vinnytsia Children's Regional Hospital

United Kingdom

Prof Siobhán Carr
Royal Brompton and Harefield NHS Foundation Trust

USA

Prof Greg Redding
University of Washington,
Seattle Children’s Hospital