- To capture Australia’s first comprehensive, high-quality data set (including longitudinal data) regarding the causes, associated morbidity and mortality, patterns of care, and healthcare resource utilisation, for adults and children with bronchiectasis.
- To generate opportunities for clinical and epidemiological research collaboration with the European Bronchiectasis Registry (EMBARC) and US Bronchiectasis Registry (COPD Foundation) through sharing of anonymised data, protocols, research ideas and expertise.
- To provide patients and families with bronchiectasis with access to local support groups, rehabilitation programs, educational resources and clinical trials.
- To develop a secure web-based IT platform for registration and data collection that will allow clinicians in both metropolitan and rural health services to collaborate in national and international clinical trials in the field of bronchiectasis.
- To ensure the Australian Bronchiectasis Registry has interoperability with US and European Bronchiectasis Registries to maximise and streamline seamless collaboration and benchmarking.
- To build, support and strengthen the network of Australian clinicians and researchers with interest bronchiectasis.
Non-Cystic Fibrosis (non-CF) bronchiectasis is caused by chronic infection of the airways and results in chronic cough, excess sputum production and in some cases chest pain, shortness of breath and coughing up of blood. Correct diagnosis of bronchiectasis can be delayed by years or even decades in both children and adults, and it is likely that many remain undiagnosed and untreated, putting these people at risk of cause long term disability, accelerated lung function loss and premature death. Despite a growing recognition of the impact of this chronic respiratory disease, accurate prevalence data, and high-level evidence for safety and efficacy of treatments is scarce when compared to other respiratory disorders such as asthma. The Australian Bronchiectasis Registry will document more clearly the incidence and prevalence of this disease in Australia, to map and track the natural history and the impact on quality of life of this currently incurable chronic disease, and to facilitate a platform of research projects including national and international collaborations.
Implications for policy and practice:
The Australian Bronchiectasis Registry is designed to capture quality data to help answer clinical and epidemiological research questions that aims to ultimately lead to better treatment and quality of life for all bronchiectasis patients.
- 2015 - ongoing
For more info visit www.lungfoundation.com.au
- Lung Foundation Australia
- European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC)
- COPD Foundation
- Cough Asthma & Airway Research Group, Queensland University of Technology,
- Centre for Children’s Health Research
- Child Health Division, Menzies School of Health Research
- Sydney Informatics Hub, The University of Sydney