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Australasian Interstitial Lung Disease Registry (AILDR)

A prospective clinical Registry for Interstitial Lung Disease (ILD)

AILDR recruits patients with all ILD 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 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:

Basic demographic data
Clinical data
Medications
Oxygen use
Pulmonary function tests
Other Investigations

More details for researchers planning to use the AILDR can be obtained by contacting the AILDR Project Manager.

Radiology Repository

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

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:

Medicare and PBS
National Death Index
National Coronial Information System
The Centre for Health Record Linkage (CHeReL)
The Centre for Victorian Data Linkage (CVDL)
Data Linkage Queensland (DLQ)
WA Data Linkage System (WADLS)
SA-NT DataLink

Biobank

The Registry is linked to biobanks at registry sites collecting serum, bronchoalveolar lavage fluid and lung tissue according to an agreed Biobanking SOP (PDF, 175.7KB).

How to access AILDR Data

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:

Investigators are encouraged to access their own centre’s data.
Access does not require Steering Committee approval.
Principal Investigators assume responsibility for own institution’s approval.
Acknowledgement of AILDR is encouraged for presentations.
Publications should adhere to the publication and authorship policy (PDF, 120.3KB).

To access multi-site data there are two steps to obtaining Steering Committee approval:

Step 1

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:

Cover letter (addressed to The Chair, Australasian ILD Registry)
Study proposal (no more than 2 pages)
List of data fields required (please refer to AILDR data dictionary (PDF, 441.1KB)).

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.

Step 2

Submit the following documents by email to the AILDR Project Manager to obtain final Steering Committee approval:

HREC approval letter
Study protocol
Budget (if applicable)

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.

Our Research

Publications

Moore, I., Wrobel, J., Rhodes, J. et al. Australasian interstitial lung disease registry (AILDR): objectives, design and rationale of a binational prospective database. BMC Pulm Med 20, 257 (2020).

Current studies

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

Abstracts/Presentations

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.

Research highlights

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.

AILDR Structure

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.

Participating Centres

There are 21 sites participating across Australia and New Zealand.

Australian ILD Registry Centres

State	Site
NSW	Concord Hospital
	John Hunter Hospital
	Royal Prince Alfred Hospital
	Sutherland Hospital
	Westmead Hospital
QLD	Princess Alexandra Hospital
QLD	The Prince Charles Hospital
SA	Flinders Medical Centre
SA	Royal Adelaide Hospital
VIC	The Alfred Hospital
	The Austin Hospital
	Box Hill Hospital
	Royal Melbourne Hospital
	St Vincent's Hospital
	Footscray Hospital
WA	Fiona Stanley Hospital
	Sir Charles Gairdner Hospital
	St John of God Subiaco Hospital