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.
In the first 3-5 years, the Child-BEAR-Net Registry aims to:
Evaluate the underlying aetiology, treatments and outcomes
Assess long-term outcomes that are important to patients, providers, and other decision-makers
Facilitate recruitment of patients for clinical studies
Our subsequent longer-term aims are to:
Provide real-world evidence on the effectiveness of interventions
Time trends of aetiology, treatments and outcomes
Identify areas of sub-standard clinical management
Improve awareness of diagnosis so as to prevent the delay of diagnosis
Link children’s data with future adult-based registries
Link with registries of other diseases where bronchiectasis is common
Each country will have governance of their own registry. Country Leads are listed below.
Albania
Dr Sonila Boriçi
University Hospital Center of Tirana
Argentina
Australia
Prof Stephanie Yerkovich
Queensland University of Technology, Menzies School of Health Research
Austria
Prof Angela Zacharasiewicz
Wilhelminen Hospital, University of Vienna
Dr Magdalena Vocos
Hospital de Clínicas José de San Martín, Universidad de Buenos Aires
Belgium
Prof Marijke Proesmans
Respiratory Paediatrics, UZ Leuven
Brazil
Prof Gilberto Fischer
University of Health Science, Hospital da Criança Santo Antonio
France
Prof Jean-Christophe Dubus
Pneumo-Allergology & Ventilation Unit, CHU Timone-Enfants and Aix-Marseille University
Germany
Prof Matthias Griese
Pediatrics Hauner
Children´s Hospital, University of Munich
Guatemala
Dr. Edgar L. Beltetón
Centro Pediátrico de Guatemala
Centro Aero Digestivo
Israel
Dr Dario Prais
Pediatric Pulmonology Institute,
Schneider Children’s Medical Center of Israel
Italy
Prof Fabio Midulla
Maternal Science, Sapienza University of Rome
Greece
Prof Konstantinos Douros
“Attikon” University Hospital, National and Kapodistrian University of Athens
Italy
Dr Laura Petrarca
Deputy Registry Lead
Sapienza University of Rome
Malaysia
Prof Anna Nathan
University of Malaya Medical Centre
Malaysia
Dr Asiah Kassim
Hospital Tunku Azizah
Kuala Lumpur
Nigeria
Prof Bankole Kuti
Obafemi Awolowo University/Teaching Hospitals Complex
Oba
Norway
Dr Christine Sachs-Olsen
Department of Paediatrics
Oslo University Hospital
Philippines
Dr Marion Sanchez
St Luke's Medical Centre
Philippine Academy of Pediatric Pulmonologists Inc.
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
Spain
Prof Antonio Moreno Galdó
Hospital Universitari Vall d’Hebron, Universitat Autònoma de Barcelona
Spain
Dr Laura Garriga Grimau
Deputy Registry Lead
Hospital Vall d'Hebron
Switzerland
Prof Alexander Moeller
University of Zurich,
University Children’s Hospital Zurich
Thailand
Dr Wicharn (Elm) Boonjindasup
Faculty of Medicine, Chulalongkorn University
Prof Bulent Karadag
Pediatric Pulmonology, Marmara University Faculty of Medicine
Turkey
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