AUSTRALIAN BRONCHIECTASIS REGISTRY (ABR)
Non-cystic fibrosis (non-CF) bronchiectasis is caused by chronic infection of the airways and results in chronic cough, excess sputum production and in some cases chest pain, shortness of breath and coughing up of blood. There is currently no cure for non-CF bronchiectasis and little information is available on the disease’s incidence, diagnosis or mortality rates in Australasia.
The Australian Bronchiectasis Registry (ABR) was established in 2015 by Lung Foundation Australia and the Australasian Bronchiectasis Consortium, an independent steering committee composed of leading respiratory physicians with expertise in clinical management and research in bronchiectasis.
The Australasian Bronchiectasis Consortium is proud to have international collaborations with the American Bronchiectasis Registry and the European Bronchiectasis Registry to leverage knowledge, expertise and optimise research outcomes.
Following the initial roll-out of the project, the registry has received agreements from more than 20 hospitals and health services across nearly all Australian States and Territories. The response has been highly successful, with recent expansion to New Zealand in progress which will enable recruitment to the newly-established New Zealand Bronchiectasis Registry.
| State or Territory | Participating Site | Principal Investigator |
|---|---|---|
| New South Wales | Concord Repatriation General Hospital Wyong Hospital Westmead Hospital Royal Prince Alfred Hospital Sydney Children’s Hospital Westmead Children’s Hospital | A/Prof Lucy Morgan Dr Cameron Hunter A/Prof Peter Middleton Prof Peter Bye Dr Louisa Owens Dr Paul Robinson |
| Queensland | Queensland Children’s Hospital Greenslopes Hospital Mater Health Services The Prince Charles Hospital | Prof Anne Chang A/Prof Rachel Thomson Dr Lucy Burr Dr Daniel Smith |
| Victoria | Monash Medical Centre The Royal Melbourne Hospital Western Health The Royal Children’s Hospital | Dr Paul King Dr Megan Rees A/Prof Lata Jayaram Dr Danielle Wurzel |
| South Australia | Royal Adelaide Hospital The Queen Elizabeth Hospital and (APY) Lands | Dr Chien Li Homes-Liew Dr Antony Veale |
| Western Australia | Royal Perth Hospital Perth Children’s Hospital Sir Charles Gairdner Hospital | Prof Grant Waterer Dr André Schultz Dr Anna Tai |
| Northern Territory | Alice Springs Hospital Royal Darwin Hospital | Prof Graeme Maguire Prof Anne Chang |
If you work with patients with bronchiectasis at a hospital or health service and would like to contribute, please contact the ABR on 1800 654 301 or [email protected].
If you are a patient with bronchiectasis and would like to become involved in the registry, you may speak to your treating doctor and enquire as to whether or not they are contributing to the ABR. Please know that recruitment at this stage is ‘centre-based’, which means patients are enrolled based an existing agreements to take part as one of our participating centres. For further information about the ABR, please contact the Australian Bronchiectasis Registry at Lung Foundation Australia on [email protected] or freecall 1800 654 301.
