ILD Registry to deliver local and global benefit

A/Prof Ian Glaspole

The Australasian ILD Registry (AILDR), a bi-national registry of patients with all ILD subtypes, has the potential to address major research questions including around new therapeutics and biomarkers of disease.

A pilot phase of the Registry, based at just four sites in Australia and comprising 1,061 patients, has just reported baseline data.

Participants were mostly male (54.7%), with a mean age of 68.3 years and mild to moderate restrictive defects on pulmonary function testing (mean FVC 79.1% predicted and mean DLCO 58.5% predicted). The mean 6MWT distance was 456.3 metres and mean nadir SpO2 91 %.

The Registry has since expanded to 20 sites across Australia and New Zealand. Diagnoses have been mostly IPF (34%) and CT-related ILD (17.8%).

Respiratory physician Associate Professor Ian Glaspole, from the Alfred Hospital, told the limbic that the pilot phase had helped test the functionality of the registry.

“And we are now in the phase of expanding the registry’s availability to additional sites.”

He said participation allowed for the entry of local site data into the Registry – data that could be useful in the day to day management of patients or in an audit of a clinic’s patient mix and outcomes.

“And then it also allows collaborative research with other sites to perform research into broader questions around ILD.”

“We continue to try and find a therapeutic that has the ability to halt the progression of fibrotic ILD. We’ve been very successful in the last decade in finding two therapies that halve the rate of progression of IPF and more recently have demonstrated efficacy in other forms of fibrotic lung disease. Nevertheless, the diseases are still progressive,” he said.

“We are trying to recognise those patients within the broader group of progressive fibrotic ILD who are most likely to progress versus those who are more likely to remain stable. So a lot of what we are doing is focusing on finding biomarkers that predict progression and prognosis and to be able to do that our intention is to have the registry linked to a large radiologic database that stores patients imaging – and also to have a biorepository of patient sera and lung tissue.”

Professor Glaspole said the team had developed a great deal of experience through running the Australian IPF Registry since 2012.

“And our experience has been that it’s of great benefit to have this nationwide approach to collaborative research in ILD. Australia is fairly unique in its ability to do that. We do have a very good collaborative group that has been recognised internationally as amongst the best in the world.”

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