Children with rare lung diseases often have inequitable care due to the rarity of their conditions (<1 in 2500 prevalence). This includes difficulty in getting a diagnosis; access to medical expertise, research and treatment as well as getting accurate information on their disease. As National and International experts we work in close collaboration with the respiratory department at Sydney Children鈥檚 Hospital in an interdisciplinary environment to ensure that we embed research and education into looking after children to address these inequities. Our work extends into national and international collaborative networks.
Our goals
Our goals are to improve diagnosis, treatment and support for children to improve the health and wellbeing of children living with a rare lung disease.
Research strengths
We have expertise caring for children with the following conditions:听
- Cystic fibrosis听
- Respiratory viruses
- Children with Interstitial Lung Disease听
- Bronchiectasis
- Tracheo-oesophageal fistula
- Congenital lung malformations听
- Primary ciliary dyskinesia听
- Neuromuscular disorders听
- Complex airways听
- Long term ventilation
We have expertise in basic discovery science and translate that research though clinical trials in children. Our research strengths include genetics, precision medicine, drug discovery, clinical trials, virtual care, big data, registries, health services and population health research.
Our results
- Our genetics approach has increased diagnoses for children with Children with Interstitial Lung Disease听
- Our drug discovery program has identified potential new therapies for cystic fibrosis听
- Our asthma research has improved outcomes in children in metropolitan and rural settings and reduced variation in care
- Our respiratory infection work has influenced national vaccine strategies
