The Australasian Interstitial Lung Disease Registry
The Australasian Interstitial Lung Disease Registry (AILDR) is a prospective clinical registry for interstitial lung disease. AILDR recruits patients with all interstitial lung disease subtypes, reflecting real world practice at clinics across Australia and New Zealand with dual objectives:
- to provide a valuable resource for high quality ILD research
- to improve care for ILD patients across Australia and NZ.
The AILDR was established in 2016 in response to growing calls for a national clinical registry to better understand ILD patterns, standardise care and provide relevant longitudinal data. Commencing with four pilot sites, there are now 23 sites participating across Australia and New Zealand with more than 4000 participants recruited and followed-up every six months.
More details for researchers planning to use the AILDR can be obtained by contacting the AILDR Project Manager.
The AILDR is supported by the Centre of Research Excellence in Pulmonary Fibrosis and participating centres. The University of Sydney manages operations including the information and communications technology framework, data governance and privacy. Lung Foundation Australia provide governance and maintains the confidence of all parties.