Data from the new Australasian Bronchiectasis Registry will help fill in some of the knowledge gaps around a largely neglected disease.
The TZANZSRS meeting was told the registry has enrolled 500 patients from 15 sites across Australia in its first year of operation.
Dr Simone Visser, bronchiectasis fellow at the Royal Prince Alfred and Concord hospitals and PhD candidate at the University of Sydney, told the limbic an opt-out consent process was helping maximise case ascertainment.
“Our aim is to collect a large data set across Australia and to follow them longitudinally. In time we will recruit thousands of patients and will start to see clusters of patients with bronchiectasis, what population groups have a higher burden of disease, and patterns of morbidity, mortality and equity of access to care.”
“Bronchiectasis has been neglected in research. Accurate epidemiological date is lacking globally and we don’t know the overall prevalence if the disease in Australia.”
“We don’t know why certain people develop bronchiectasis, how it affects patients personally or how it impacts the health system. And there are few evidence based treatments specific for the condition,” she said.
Early descriptive data shows an expected majority of adults are female (69%) with a mean age of 66 years. 39 paediatric patients are registered.
Most cases were post-infective or idiopathic bronchiectasis with a proportion of cases caused by the human T-cell lymphotropic virus (HTLV1) – an aetiology specific to the Indigenous community in Australia.
Dr Visser said the Australian registry was unique for including paediatric patients and additional data relevant to Indigenous patients. The registry was also linked to Medicare and the PBS to provide data on patterns of health care utilisation.
“We suspect there is a high impact on the health system as we know the average length of stay in hospital for patients with bronchiectasis is significantly longer than the average hospital admission,” she said.
“However information has been hard to capture as there is no bronchiectasis DRG. When a patient is admitted they are coded as COPD.”
Dr Visser said the registry would be expanding to recruit nationally from 2018.
The Australian IT platform is interoperable with the recently established European and US registries providing an opportunity for international collaborative research.
The registry, a Lung Foundation Australia initiative, is run by an independent steering committee led by Associate Professor Lucy Morgan from Concord Hospital.