Lung Foundation Australia launches Australian Bronchiectasis Registry
In January 2016, the Australian Non-Cystic Fibrosis Bronchiectasis Registry (ABR) received approval to start recruitment at Concord Repatriation General Hospital in Sydney. This is the first of 11 Australian centres taking part in the first stage of this national research project into bronchiectasis, a relatively common condition with no known cure. Participation at this stage is centre-based which means patients who are seen at any one of the 11 centres involved may be invited by their respiratory doctor to take part.
The project was established in 2015 by a working group of senior clinicians, chaired by A/Prof Lucy Morgan, a respected clinician and teacher of respiratory medicine at Concord Hospital. The goal of the ABR is to help health professionals gain a better understanding of bronchiectasis, its impact on everyday life and the effectiveness of current treatment practices. This can be achieved by collecting data about microbiology, treatments, demographics, indigenous status, quality of life and healthcare costs in a standardised way. Patients who choose to participate will be agreeing to contribute their health information and permit their doctor to record this information in the ABR.
The project has strong support from the international bronchiectasis network. Lung Foundation Australia and its partners believe the ABR will foster more international research and undoubtedly play a large role in increasing awareness of bronchiectasis in the community and the information available for health professionals.
For patients, the direct benefits of participating include learning more about their bronchiectasis, staying up-to-date on new clinical trials and knowing that their participation is moving medical knowledge forward to benefit future patients. The second stage plans to expand the registry recruitment to many other centres across Australia to provide even more accurate and powerful results.