Access

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, please also review the AILDR Data Access Policy. 

For access to single site data:

• Principal investigators assume responsibility for own institution’s approval.
• Access does not require Steering Committee approval.
• Acknowledgement of AILDR is encouraged for presentations.
• Publications should adhere to the publication and authorship policy.

There are 2 steps to obtaining steering committee approval to access multi-site data:

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:

• a 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).

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.

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.

After 10 years of operation, the Australian Idiopathic Pulmonary Fibrosis Registry (AIPFR) was finalised in 2022. This rich research platform supported a wide range of projects, with more than 24 peer reviewed publications across epidemiology, prognostic indicators including biomarkers and artificial intelligence using HRCT scans, health economics, and genetic studies.

The research using AIPFR data has contributed to an improved understanding of the complex disease idiopathic pulmonary fibrosis and thereby improved management and outcomes for people living with idiopathic pulmonary fibrosis .

Data collected from 867 generous participants living with idiopathic pulmonary fibrosis continues to be available for research and includes:

• patient reported outcomes
• pulmonary function
• HRCT scans
• blood samples.

All stages of the AIPFR cohort were longitudinal with data collection until death or transplant. Where participants 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.

Contact the AILDR Project Manager to learn how to obtain AIPFR Principal Investigator approval and access AIPFR data, HRCT scans and/or biobank samples.