The australasian bronchiectasis registry-Early steps in mapping the impact of bronchiectasis in australia and new zealand

Abstract

Introduction/Aim: Despite a growing worldwide recognition of bronchiectasis as a cause of substantial morbidity and healthcare utilisation, little is known about the prevalence or burden of disease for Australians and New Zealanders. The Australasian Bronchiectasis Registry (ABR) was established to fill this gap and to promote international collaborative research. Methods: A comprehensive Registry has been developed by the Australasian Bronchiectasis Consortium with the support of Lung Foundation Australia (LFA), the European (EMBARC) and US Bronchiectasis Registries, with common data fields to ensure interoperability and future collaboration, and some unique data-fields to capture information specific to Australia and New Zealand. Investigators identify participants during episodes of care or from preexisting local databases. Patients are eligible if non-CF bronchiectasis is reported on high-resolution computed tomography chest scan. Patient demographics and clinical information are obtained at baseline, annual review and during clinical exacerbations. Linkage to Medicare and Pharmaceutical Benefits Scheme (PBS) information provides the opportunity to study health care resource utilisation. Results: As the first step towards a regional standardised registry, the project has been initiated at 15 hospitals, including adult, paediatric, metropolitan and regional sites. Enrolment commenced at the pilot site (Concord Hospital) in March 2016 and as of October 2016 is being undertaken at 10 sites, with the remainder awaiting research governance approvals. To date, 261 patients have been enrolled; females 166 (64%), mean age 64.7 ± 19.4 years. Conclusion: The ABR is a secure, web-based platform to capture the first comprehensive longitudinal data set of patients with bronchiectasis in Australia and New Zealand. Unique features include the use of optout consent, collection of paediatric data and linkage to PBS/Medicare data which will allow for the first time, a topographic map of bronchiectasis in Australia and New Zealand.L6178405882017-08-23 <br />