AILDR recruits patients with all ILD subtypes, reflecting real world practice at clinics across Australia and New Zealand with dual objectives:
The AILDR was established in response to growing calls for a national clinical Registry to better understand Interstitial Lung Disease patterns, standardise care and provide relevant longitudinal data. Commencing with four pilot sites in 2016, there are now 21 sites participating across Australia and New Zealand with more than 2000 participants recruited and followed-up regularly every 6 months.
Inclusion criteria for participants includes age 18 years of age, ability to provide written informed consent, and diagnosis of ILD according to American Thoracic Society/European Respiratory Society (ATS/ERS) criteria. The core data recorded on the registry includes:
More details for researchers planning to use the AILDR can be obtained by contacting the AILDR Project Manager.
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 deidentified format via the central XNAT imaging platform.
Data linkage to the following AIHW datasets and state-based linkage units is planned to facilitate future studies of health service use, epidemiology, and needs analysis:
One of the main aims of the Registry is to provide a valuable resource for researchers and to enable collaborative research. It is advisable for researchers considering using the data to speak to one of the chairs early in the process so that we can assist with applications advice.
For access to single site data:
To access multi-site data there are two steps to obtaining Steering Committee approval:
Submit the following documents by email to the AILDR Project Manager to obtain “In-Principle” approval from the AILDR Steering Committee and reserve the study:
Research proposals will be reviewed by the AILDR Research Sub-Committee to ensure that the proposal is unique and addresses a specific and sound scientific question. A recommendation will be made to the Executive of the Steering Committee who will subsequently vote to approve the study proposal. Researchers will be informed of the outcome to the application within 4 weeks of the initial application.
Submit the following documents by email to the AILDR Project Manager to obtain final Steering Committee approval:
The Steering Committee will consider the full application and subject to queries being addressed, Researchers will be notified of final approval as soon as possible, usually within 4-6 weeks from receipt of the study protocol.
Gender bias project in collaboration with CARE PF Registry - Dr Robert Sheehy
Clinical Validation of a Hypersensitivity Pneumonitis (HP) Exposure Questionnaire - Dr Hayley Barnes
CT Deep Learning Algorithm to predict prognosis in ILD - Dr John Mackintosh, A/Prof Tamera Corte
Interstitial Pulmonary Fibrosis descriptive analysis - Prof Frank Thien
TSANZSRS Annual Scientific Meeting 2020: SIG Posters OLIV: Real World Interstitial Lung Disease Experience - Data from the Australasian Interstitial Lung Disease Registry (AILDR) – Moore, I.
ATS May 2020: A3351, Real World Interstitial Lung Disease Experience - Data from the Australasian Interstitial Lung Disease Registry (AILDR) – Moore, I.
Registry for Better Understanding of ILD: RE-BUILD Smartphone App
AILDR Investigators have been working on developing a digital mobile health solution for patients with ILD which has the potential to transform the way participants self-manage their health and interact with researchers particularly for patients living rurally or remotely who are not close to ILD centres.
The RE-BUILD app prototype is set to commence real user testing in September 2021 at three ILD research centres in NSW and Victoria (Royal Prince Alfred Hospital, Austin Health, and The Alfred Hospital).
Participants in the app’s pilot study will help Investigators test the app’s functions by sharing their health information, spirometry results, and submitting questionnaires over a 6-month period. The app will make use of smartphones in-built technology to gather invaluable physical activity data and air quality at participants’ location while they go about their daily lives. The app utilises smart digital nudges - offering suggestions, reminders and positive reinforcement that are specifically designed to help users monitor and improve their health status. Other novel features include a straightforward feed to high-quality informative resources from trusted sources and the ability for to users stay up to date with clinical trials and research studies all without leaving the app.
Investigators hope that following this pilot study the RE-BUILD app will be available for adoption across all Australasian ILD Registry sites in Australia and New Zealand.
The Registry was designed to build upon the Lung Foundation Australia’s success with development and administration of the Australian Idiopathic Pulmonary Fibrosis Registry.
The University of Sydney manages operations including IT, financial and legal aspects. Lung Foundation Australia provide governance and maintain the confidence of all parties. The AILDR Steering Committee provide oversight, direction, and guidance to ensure sound operations, to promote effective use of the data and to facilitate collaboration across institutions, States, disciplines and internationally. Membership of the Committee is broadly multi-disciplinary and includes representatives from all participating Australian states and New Zealand. Advisors and consumers are called upon to advise the Committee as required.
The AILDR is supported by the Centre of Research Excellence in Pulmonary Fibrosis (funded by the NHMRC, Lung Foundation Australia, Three Lakes Foundation, anonymous philanthropy, and Foundation partner Boehringer Ingelheim) and participating centres.
There are 21 sites participating across Australia and New Zealand.
Australian ILD Registry Centres
|John Hunter Hospital|
|Royal Prince Alfred Hospital|
|QLD||Princess Alexandra Hospital|
|The Prince Charles Hospital|
|SA||Flinders Medical Centre|
|Royal Adelaide Hospital|
|VIC||The Alfred Hospital|
|The Austin Hospital|
|Box Hill Hospital|
|Royal Melbourne Hospital|
|St Vincent's Hospital|
|WA||Fiona Stanley Hospital|
|Sir Charles Gairdner Hospital|
|St John of God Subiaco Hospital|
New Zealand ILD Registry Centres
|Auckland||Auckland City Hospital|
Translation and Patient Engagement