The Australasian Interstitial Lung Disease Registry (AILDR) recruits patients with all Interstitial Lung Disease (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 23 sites participating across Australia and New Zealand with more than 4000 participants recruited and followed-up annually.
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:
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:
The Registry is linked to biobanks at registry sites collecting blood serum, bronchoalveolar lavage fluid and lung tissue according to standardised procedures.
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. Publications should adhere to the publication and authorship policy.
There are two steps to obtaining Steering Committee (SC) 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 Steering Committee at the next scheduled meeting to ensure that the proposal is unique and addresses a specific and sound scientific question.
The Executive of the Steering Committee will subsequently vote to approve the study proposal. Researchers will be informed of the outcome to the application within 4 weeks of the meeting.
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.
Assayag, D., Adegunsoye, A., Sheehy, R., Morisset, J., Khalil, N., Johannson, K. A., Marcoux, V., Kolb, M., Fisher, J. H., Manganas, H., Wrobel, J., Wilsher, M., De Boer, S., Mackintosh, J., Chambers, D. C., Glaspole, I., Keir, G. J., Lee, C. T., Jablonski, R., Vij, R., … Ryerson, C. J. (2023). Sex- and Race-Based Differences in the Treatment of Interstitial Lung Diseases in North America and Australasia. Chest, 163(5), 1156–1165.
Barnes, H., Morisset, J., Molyneaux, P., Westall, G., Glaspole, I., Collard, H. R., & CHP Exposure Assessment Collaborators (2020). A Systematically Derived Exposure Assessment Instrument for Chronic Hypersensitivity Pneumonitis. Chest, 157(6), 1506–1512.
Moore, I., Wrobel, J., Rhodes, J., Lin, Q., Webster, S., Jo, H., Troy, L., Grainge, C., Glaspole, I., Corte, T. J., & Australasian ILD Registry (2020). Australasian interstitial lung disease registry (AILDR): objectives, design and rationale of a bi-national prospective database. BMC pulmonary medicine, 20(1), 257. (pdf, 1.57MB)
We have over 20 active research studies from collaborators across Australia and NZ.
Registry for Better Understanding of ILD: RE-BUILD Smartphone App
The RE-BUILD app is a digital mobile health solution developed by AILDR Investgators to enhance opportunities for self-monitoring and remote assessment particularly for patients living rurally or remotely who are not close to ILD centres.
The RE-BUILD app completed real user testing at three AILDR centres (Royal Prince Alfred Hospital, Austin Health, and The Alfred Hospital) in mid 2023 with patients scoring the app highly for usability, self-monitoring and data collection.
The Re-Build app has exciting potential for use in collaborative ILD research in Australia and globally. A randomised clinical trial comparing the effect on health-related quality of life for people with Interstitial Lung Disease (REBUILD-SM trial) is scheduled to commence by mid-2024 with up to 400 patients participating at four AILDR sites: Royal Prince Alfred Hospital, Austin Health, Alfred Hospital, and Prince Charles Hospital.
Investigators anticipate that following the successful recruitment for the clinical trial 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 23 sites participating across Australia and New Zealand.
| State | Site | Principal Investigator |
|---|---|---|
| NSW | Concord Hospital | Dr Elizabeth Veitch |
| John Hunter Hospital | Associate Professor Chris Grainge | |
| Royal Prince Alfred Hospital | Professor Tamera Corte | |
| Sutherland Hospital | Associate Professor Benjamin Kwan | |
| Westmead Hospital | Dr Odette Erskine | |
| QLD | Princess Alexandra Hospital | Dr Gregory Keir |
| The Prince Charles Hospital | Dr John Mackintosh | |
| SA | Flinders Medical Centre | Dr Jason D'Costa |
| Royal Adelaide Hospital | Professor Paul Reynolds | |
| The Queen Elizabeth Hospital | Dr Jonathon Polasek | |
| VIC | The Alfred Hospital | Associate Professor Ian Glaspole |
| The Austin Hospital | Associate Professor Nicole Goh | |
| Eastern Health | Professor Frank Thien | |
| St Vincent’s Melbourne Hospital | Dr Chong Weng Ong | |
| Royal Melbourne Hospital | Dr Jyotika Prasad | |
| Western Health | Dr Shalini Bastiampillai | |
| WA | Fiona Stanley Hospital | Dr Jeremy Wrobel |
| Royal Perth Hospital | Dr Irene Moore | |
| St John of God Subiaco Hospital | Professor Eli Gabbay, Dr KP Lim | |
| Sir Charles Gairdner Hospital | Associate Professor Vidya Navaratnam |
| State | Site | Principal Investigator |
|---|---|---|
| Auckland | Auckland City Hospital | Dr Sally de Boer |
| Christchurch | Christchurch Hospital | Dr Adrienne Edwards |
| Hamilton | Waikato Hospital | Dr Harry Gallagher |
The AIPFR has now been finalised. Data collected from 867 generous participants living with IPF, includes patient reported outcome data, pulmonary function data, HRCT scans and blood samples, continues to be available for research. A foundation platform of the Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF), the AIPFR has been a collaborative project since inception. The success of this collaborative model is illustrated in AIPFR data facilitating diverse research projects resulting in more than 24 papers published in peer reviewed journals.
Participant recruitment started in February 2011 and ended December 2020.
| AIPFR | Number Participants Recruited | Blood substudy (# participants) |
AIPFR Stage description of recruitment** |
|---|---|---|---|
| Stage 1 | 679 | 202 | Australia wide, clinical diagnosis any stage of disease |
| Stage 2 | 167 | 167* | ILD Specialist centre, recent MDT diagnosis of IPF |
| Stage 3 | 21 | N/A | ILD Specialist centre, any other patient, IPF diagnosis |
| Total | 867 | 369 | |
| Non screening log | 104 | N/A | Patient invited to join AIPFR who declined, any stage, |
*106 participants with at least 4 serial blood samples
** Refer to the AIPFR protocol (pdf, 785KB) for further information
Data collection finished 31 December 2021, with vitality and transplant status continuing to be updated where possible. All Stages of the AIPFR cohort are longitudinal with data collection until death or transplant. Where participants indicated that they were no longer able to complete questionnaires, physician and test results continued to be collected. HRCT scans and blood samples were also routinely collected from AIPFR participants.
For information on the AIPFR Stages and data, scan and sample collection intervals please refer to the AIPFR protocol (pdf, 785KB).
| Data source | Frequency | Summary of data content collected |
|---|---|---|
| i. Participant questionnaire Stages 1–3 |
Current information collection Repeated every 6-months (At 0, 3, 6-months, then 6 monthly for Stage 2–3) |
Current information on:
|
| ii. Physician questionnaire Stage 1 ONLY |
Repeated every 6-months but collecting distinct information for every patient visit during this time (At 0, 3, 6-months, then 6 monthly for Stage 2–3) |
|
| iii. Clinical investigations Stage 1 listed investigations collected Stage 2–3 ONLY specified investigations collected |
Ongoing although new investigations are identified every 6-months (At 0, 3, 6-months, then 6 monthly for Stage 2–3) |
|
| iv. Expert panel review Stage 1 ONLY |
When a HRCT scan and/or surgical biopsy are identified for a participant |
|
| v. Treatment questionnaire Stage 2–3 ONLY |
At 0, 3, 6-months, then 6 monthly |
Current information on:
|
| vi. Treatment physician form Stage 2–3 ONLY |
At 0, 3, 6-months, then 6 monthly |
Current information on:
|
| vii. Vitality status Stage 1, 2 and 3 |
At advice/collection | Vitality status fields including any information on Date of death and/or transplant |
AIPFR High Resolution Computed Tomography (HRCT) scans are available to approved researchers in a deidentified format via the central XNAT imaging platform. A total of 809 HRCT scans are available for AIPFR participants. Most AIPFR participants have one HRCT collected, however on occasion multiple scans are available for a single participant. In Stage 2, the HRCT reviewed by the MDT for diagnosis was collected.
Scans cannot be copied or downloaded from XNAT. For further information see AILDR Radiology Repository section.
A total of 396 AIPFR participants have at least one blood sample collected. Plasma, serum and RNA samples were collected at the first sample collection. For Stage 2 participants plasma and serum were collected at subsequent collections. The number and frequency of sample collection is detailed in the AIPFR protocol v1 12 May 2017 (pdf, 785KB).
AIPFR was originally established through the generous support of a philanthropic family and the Royal Hobart Hospital Research Foundation.
The Australian IPF Registry was supported by long term Foundation partners Boehringer Ingelheim and Roche Products Pty Ltd. Financial support for the Australian IPF Registry was also proudly provided in the form of an unrestricted educational grants.
AIPFR also gratefully acknowledges the generous contribution of the members of the Registry of Steering Committee (now PIC), Radiology and Histopathology Review panel members together with AIPFR Coordinators, Data Mangers, and Manager.
One of the main aims of the Australian IPF Registry (AIPFR) is to provide a valuable resource for researchers and to facilitate collaborative research. It is advisable for researchers considering using AIPFR data to speak to one of the AIPFR Co-chairs early in the process so that they can provide advice on applications. Researchers approved to use AIPFR data may also be asked to include and work with an AIPFR Principal Investigator to advise on the appropriate use and interpretation of AIPFR data.
There are two steps to obtain AIPFR Principal Investigator approval and access AIPFR data, HRCT scans and/or biobank samples.
Submit the following documents by email to the AILDR Project Manager to obtain “In-Principle” approval from the AIPFR Principal Investigator Committee (PIC) and reserve the study:
The AIPFR PIC will review and consider research proposals to ensure that the proposal is unique and addresses a specific and sound scientific question. The AIPFR PIC will review proposals as they are received.
Submit the following documents by email to the AILDR Project Manager to obtain final AIPFR PIC approval:
The AIPFR PIC will be review and consider the full application as they are received.
Successful researchers will be asked to help AILDR Manager facilitate signing of a “Release Information Agreement for research projects” between University of Sydney and their institution.
If the research will be undertaken at or by a Principal Investigator located by an institution that is not part of the National Mutual Acceptance (NMA) Scheme for ethics review, the researchers will also need to make a Site Specific Application (SSA) to the Sydney Local Health District (RPAH Zone) HREC.
A fee to cover the preparation of AIPFR data may be charged.
Publications of research using AIPFR data will be required adhere to the AIPFR Publication policy V1.4 4 Sept 2022 (pdf, 416KB)
*Does not use AIPFR data but involved the AIPFR team
Mailing address
Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF)
Faculty of Medicine and Health
The University of Sydney
NSW, 2006
