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:
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Evaluate the underlying aetiology, treatments and outcomes
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Assess long-term outcomes that are important to patients, providers, and other decision-makers
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Facilitate recruitment of patients for clinical studies
Our subsequent longer-term aims are to:
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Provide real-world evidence on the effectiveness of interventions
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Time trends of aetiology, treatments and outcomes
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Identify areas of sub-standard clinical management
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Improve awareness of diagnosis so as to prevent the delay of diagnosis
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Link children’s data with future adult-based registries
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Link with registries of other diseases where bronchiectasis is common
Each country will have governance of their own registry.
Registry Leads

Albania
Dr Sonila Boriçi
University Hospital Center of Tirana

Argentina
Dr Magdalena Vocos
Hospital de Clínicas José de San Martín, Universidad de Buenos Aires

Argentina
Dr Gabriela Andrada
Hospital Alemán
Buenos Aires

Argentina
Dr Silvina Zaragoza
Hospital de NIños Ricardo Gutiérrez

Australia
Prof Stephanie Yerkovich
Chair
Queensland University of Technology, Menzies School of Health Research

Austria
Prof Angela Zacharasiewicz
Wilhelminen Hospital, University of Vienna

Belgium
Prof Marijke Proesmans
Respiratory Paediatrics, UZ Leuven

Denmark
A/Prof Sune Rubak
Danish Center of Pediatric Pulmonology and Allergology
University Hospital of Aarhus

France
Prof Ralph Epaud
Centre Hospitalier Intercommunal de Créteil,
Paris XII University, INSERM, IMRB, Créteil,

Germany
Prof Folke Brinkmann
University Hospital Schleswig-Holstein,
Lübec

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

Guatemala
Dr. Edgar L. Beltetón
Centro Pediátrico de Guatemala
Centro Aero Digestivo

India
Dr Nagarjun N
Shishuka Children's Specialty Hospital
Bangalore

Ireland
Prof Basil Elnazir
Children’s Health Ireland and Trinity College Dublin

Israel
Dr Eyal Jacobi
The Pulmonology Institute, Schneider Children’s Medical Center of Israel

Israel
Prof Dario Prais
The Pulmonology Institute,
Schneider Children’s Medical Center of Israel

Italy
Prof Fabio Midulla
Maternal Science, Sapienza University of Rome

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

New Zealand
Dr Adrian Trenholme
University of Auckland, Auckland
Oba

Philippines
Dr Marion Sanchez
St Luke's Medical Centre Philippine Academy of Pediatric Pulmonologists

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

Saudi Arabia
Dr. Ali Alsuheel Asseri
King Khalid University

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

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

United States of America
Prof Christian Benden
Boston Children's Hospital and Harvard Medical School

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

Thailand
Dr Wicharn (Elm) Boonjindasup
Faculty of Medicine, Chulalongkorn University