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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.

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.

XNAT

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

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).

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.

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

State Site
NSW Concord Hospital
John Hunter Hospital
Royal Prince Alfred Hospital
Sutherland Hospital
Westmead 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
Footscray Hospital
WA Fiona Stanley Hospital
Sir Charles Gairdner Hospital
St John of God Subiaco Hospital

New Zealand ILD Registry Centres

City Site
Auckland Auckland City Hospital
Christchurch Christchurch Hospital
Hamilton Waikato Hospital

 

Our people

Co-Chairs:

Executive:

  • Professor Dan Chambers
  • Dr Sally de Boer
  • Associate ProfessorNicole Goh
  • Associate Professor Chris Grainge
  • Dr Greg Keir
  • Dr Yet Khor
  • Associate Professor Yuben Moodley
  • Professor Paul Reynolds
  • Jess Rhodes RN
  • Dr Lauren Troy
  • Professor Margaret Wilsher
  • Dr Jeremy Wrobel

Regular Members:

  • Dr Hayley Barnes
  • Dr Laura Glenn
  • Dr Adelle Jee
  • Dr John Mackintosh
  • Dr Irene Moore
  • Sacha Macansh
  • Dr Robert Sheehy
  • Dr Alan Teoh
  • Professor Frank Thien

Advisory Members:

Epidemiology

  • Dr Vidya Navaratnam

Palliative Care

  • Associate Professor Natasha Smallwood

Pathology

  • Professor Wendy Cooper
  • Dr Annabelle Mahar

Radiology

  • Associate Professor Samantha Ellis
  • Dr David Milne

Translation and Patient Engagement

  • Professor Anne Holland