Our collaborative team of pulmonary fibrosis researchers are also involved in a range of other research projects, both complete and ongoing.
CRE-PF 2017-2023
The inaugural Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF 2017-2023) worked to address an urgent need for more effective, personalised approaches to identify and better manage fibrotic lung diseases. The research and achievements of the first CRE-PF included:
- The investigator team publishing more than 230 pulmonary fibrosis manuscripts. Impact has been far reaching with thousands of citations, across numerous countries and disciplinary areas ranging from medicine to biology and pharmaceutics. Many papers are in the 10% most-cited journals, with >30 in the field’s top 2 journals.
- Generating the first Australian estimates of incidence, prevalence, mortality, costs and quality of life for idiopathic pulmonary fibrosis.
- Extending efforts to develop models to predict patient outcomes in pulmonary fibrosis by describing biomarker signatures for progressive disease and characterising other biological differences in idiopathic pulmonary fibrosis.
- Moving the treatment paradigm towards precision care by advancing knowledge of genetic risk factors and developing a molecular signature for progressive pulmonary fibrosis. This work, together with our inter/national clinical trials (e.g., ambulatory oxygen, danazol) is changing clinical practice.
- Developing strategies to enhance and extend quality of life, and reduce healthcare burdens, e.g., randomised controlled clinical trial of pulmonary rehabilitation to improve quality of life in pulmonary fibrosis.
- Establishing an ongoing and growing clinical trials network, Pulmonary fibrosis Australasian Clinical Trials (PACT), to support pulmonary fibrosis trials in the region and improve health care access to trials by directly linking participants to them.
- Implementing world’s best practice for pulmonary fibrosis diagnosis, clinical phenotyping and disease management. Position papers on the diagnosis and management of idiopathic pulmonary fibrosis and connective tissue disease-associated ILD were published. A diagnostic toolkit was developed and implications of diagnostic criteria on clinical practice and essential components of diagnosis described.
- Developing and disseminating educational support resources for patients and community partners. Research evidence was translated into 13 patient written resources, 16 webinars and patient support programs in partnership with Lung Foundation Australia. These educational and support resources were accessed >10,000 times and counting.
- Working with the pulmonary fibrosis community to define research priorities (published 2021) and establish a dedicated pulmonary fibrosis research Consumer Advisory Group.
- Establishing an ongoing national training scheme for pulmonary fibrosis research (CREATE). Fostered over 40 emerging pulmonary fibrosis researchers to grow in their careers.
- Joining partners Lung Foundation Australia and Rare Voices to successfully lobby for the National Strategic Action Plans for Lung Conditions (2019) and Rare Diseases (2020). These were followed by a swift government response with multi-million-dollar commitment including dedicated research funding for chronic respiratory conditions.
Registry for Better Understanding of ILD: RE-BUILD Smartphone App
The RE-BUILD app is a digital mobile health solution developed 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 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), commenced mid-2024 with a target of up to 400 patients participating at four 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 wide adoption.
Treatable Traits in Interstitial Lung Disease (TTRILD) Study
This project will develop a treatable-trait-based precision medicine approach to Interstitial Lung Disease (ILD).
TTRILD targets a range of treatable traits: pulmonary (e.g. inflammation, fibrosis), extra-pulmonary (e.g. sarcopenia, osteoporosis), difficult symptoms (e.g. cough, dyspnoea), and risk factors (e.g. smoking, anxiety/depression). The effectiveness of the TTRILD program is being evaluated, compared to standard care, in a randomised controlled trial.