Data

Inclusion criteria for participants includes age 18 years of age, ability to provide written informed consent, and diagnosis of interstitial lung disease according to American Thoracic Society/European Respiratory Society (ATS/ERS) criteria.

The core data recorded on the Australasian ILD Registry includes:

• basic demographic data
• clinical data
• medications
• oxygen use
• pulmonary function tests
• high resolution CT Scans
• other investigations.

The University of Sydney Imaging Data Service established the AILDR High Resolution Computed Tomography (HRCT) repository in 2021, enabling serial high resolution CT scans to be accessible to researchers in a de-identified format via the University of Sydney Imaging Data Service.

Data linkage to the following national datasets is planned to support future studies of health service use, epidemiology, and needs analysis:

• Medicare and PBS
• National Death Index
• National Patient Admitted Data.

The Registry is linked to biobanks at several registry sites collecting and processing blood, bronchoalveolar lavage fluid (BAL) and lung tissue according to standardised procedures.