There is little information available on the incidence, diagnosis and mortality rates of bronchiectasis in Australia. Without this knowledge and information, it is very difficult to make any advancement in finding new treatments and searching for a cure.
Lung Foundation Australia is working to fill this gap and improve the quality of life and outcomes for children and adults living with bronchiectasis by investigating the cause, treatments and quality of care through our Australian Bronchiectasis Registry.
Australian Bronchiectasis Registry
The Australian Bronchiectasis Registry collects data on people living with bronchiectasis to facilitate research, improve clinical management practices and maximise opportunities for patients to participate in clinical trials. It was established in 2015 by Lung Foundation Australia and the Australasian Bronchiectasis Consortium. The Consortium is an independent steering committee composed of Australia’s and New Zealand’s leading respiratory physicians with experience, interest and skill in both clinical management and research.
Lung Foundation Australia is also working collaboratively with the COPD Foundation and the European Multicentre Bronchiectasis Audit and Research Collaboration (EMABRC) to leverage knowledge, expertise, protocols and ideas that will help to optimise research outcomes.
Why we need a Bronchiectasis Registry
The Australian Bronchiectasis Registry is a critical data platform that enables research into new treatments that could change the lives of many children and adults living with bronchiectasis. The ability to conduct this research also provides hope for prevention and a cure. Through the registry, we are working to:
- understand the cause, incidence and prevalence of bronchiectasis
- explore the burden of illness and of treatment
- support the exploration of innovative treatments
- improve quality of life and offer opportunities for consumer engagement
- identify the economic impact of bronchiectasis on an individual and our community
- maximise equity of access for all Australians to bench marked, evidence-based management for bronchiectasis.
Registry data is also combined with Medicare and pharmaceutical data, enabling us to provide researchers with a rare and exceptional opportunity to learn more about healthcare utilisation and costs associated with bronchiectasis and treatment outcomes.
The Australian Bronchiectasis Registry is nationally and internationally recognised for contributing data to a number of research projects. However, in order to continue this important body of work, funding support is needed.
How you can help
Every dollar can make a difference. Funding support from organisations and donations made by the public will help to increase hospital participation in the Australian Bronchiectasis Registry and patient involvement. It will also allow for improved data capture and increased participant numbers, which will impact on the collection of a comprehensive, longitudinal and comparable quality data set on bronchiectasis.
This in turn will form a solid foundation that can be used to generate greater understanding of this disease, improving treatments, benchmarking clinical care and developing patient education and support networks. There are a number of ways organsiations can support the Australian Bronchiectasis Registry – please contact us for more information or donate via the button below.
How patients can get involved
Recruitment to the Registry is ‘centre-based’, which means patients who are seen at any one of the participating centres may be invited directly by their respiratory physicians to take part at their clinic visit or by correspondence.
Due to the limitations within the project’s human research ethics approvals, we are unable to enroll participants directly at the Lung Foundation Australia or via our website.
To find a participating centre, please contact us.