AILDR - Information for Participants
The Australasian Interstitial Lung Disease Registry (AILDR) is a research project that collects health information from people living with interstitial lung disease (ILD) across Australia and New Zealand. The registry helps doctors and researchers better understand ILD and improve care now and in the future.
Taking part in the AILDR
Adults (18 years and older) with a diagnosis of ILD may be invited to take part through a participating hospital or clinic. AILDR includes many specialist respiratory and ILD centres across Australia and New Zealand.
Participation is voluntary, and choosing not to take part will not affect your medical care.
With consent, the AILDR may collect information such as:
- ILD diagnosis and medical history
- Lung function tests and scan results
- Treatments and health outcomes over time
Some participating sites may also invite patients to provide optional biological samples (such as blood) to support future research.
Privacy and why it matters
Your information is stored securely and used in a de-identified way for approved research only.
By taking part in AILDR, you are helping researchers and clinicians learn more about this rare set of lung diseases, compare real-world treatments, and improve care for people with ILD into the future.
Registry research
Information collected through the AILDR is used for approved research projects that aim to better understand ILD and improve patient care.
Registry-based research may include:
- Studying different types of ILD and how they progress over time
- Understanding how ILD is treated in real-world clinical practice
- Identifying factors that influence outcomes and quality of life
- Supporting the development of future clinical trials and treatments
All research using AILDR data is reviewed and approved through appropriate ethics and governance processes.
Want to know more?
Please speak with your treating doctor or clinic or contact Registry staff at aild.registry@sydney.edu.au or on +61 2 9036 4501.