New project manager appointed to create a new Australian Bronchiectasis Registry
Lung Foundation Australia is pleased to announce the appointment of a new Bronchiectasis Project Manager, Dan Jackson. Dan is currently working alongside the Principal Investigator Group on the Australian Bronchiectasis Registry (ABR) development, with an upcoming launch planned for early 2016.
The ABR will act as web-based registration and data collection platform available initially to Australian metropolitan and rural healthcare centres from the Steering Committee. Following successful piloting, additional sites will be invited to recruit participants to the registry.
The ABR will house a much more comprehensive data set than previously possible, capturing data on different aetiologies, comparative treatment regimes, demographics, quality of life, healthcare resource use, severity and prognosis in both adults and children.
The major benefits of the registry will be to facilitate Australian Clinicians and Researchers with a comprehensive description of characteristics and burden of this disease in Australia and the opportunity for systematically tracking, evaluating and improving treatment outcomes and quality of life for patients. These are central issues for bronchiectasis patients and also of significant importance to the Australian healthcare system.
Lung Foundation Australia has also sought for ABR to augment innovative international Investigator research and productive clinical trial collaboration by forming a strong collaboration with the US-based COPD Foundation’s Bronchiectasis Registry and the European Bronchiectasis Registry (EMBARC). Given the strong match with ABR’s aims an agreement was struck to establish a world-class registry with common standardised data fields, plus additional and unique Australian-specific data elements, on a shared existing IT platform.
Ultimately, ABR will endeavour to provide a complete and accurate snapshot of data that allow for improved evaluations of existing treatments and to increase knowledge and improve health care performance in this largely unexplored and currently incurable disease.
Lung Foundation Australia invites financial support to make this important research platform a reality.
For further information, contact:
Bronchiectasis Project Manager
07 3251 3600
The establishment of the Australian Bronchiectasis Registry, is generously supported by the following:
|Seed funding was generously received from: |