Australian Bronchiectasis Registry
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 Australia.
The Australian Bronchiectasis Registry is a non-commercial research project that has been initiated by a group of Australian Respiratory Specialist doctors together with Lung Foundation Australia.
The main aims of this registry are to identify and collect health information from patients with non-Cystic Fibrosis (non-CF) Bronchiectasis for doctors to research the causes and to improve treatments. Ultimately, we want to discover a cure or vaccination for this debilitating disease which affects both children and adults.
The project has gained strong support from the international Bronchiectasis network. A key collaborative partnership with the American Bronchiectasis Registry and the European Bronchiectasis Registry has been formed allowing us to combine our knowledge and expertise to ensure the best research outcomes.
Recruitment opened in January 2016 at Concord Hospital with a staggered roll-out of the Registry commencing in NSW and then to each State and Territory, as soon as the required research ethics approvals are received.
State or Territory
|New South Wales||Concord Hospital||A/Prof Lucy Morgan|
|Royal Prince Alfred Hospital||Prof Peter Bye|
|The Sydney Children’s Hospitals Network, Randwick||Dr Louisa Owens|
|Westmead Hospital||A/Prof Peter Middleton|
|Wyong Hospital||Dr Cameron Hunter|
|Queensland||Greenslopes Hospital||A/Prof Rachel Thomson|
|Lady Cilento Children’s Hospital||Prof Anne Chang|
|Mater Hospital Brisbane||Dr Lucy Burr|
|The Prince Charles Hospital||Dr Daniel Smith|
|Victoria||Monash Medical Centre||Dr Paul King|
|South Australia||Royal Adelaide Hospital||Dr Chien Li Homes-Liew|
|Western Australia||Royal Perth Hospital||Prof Grant Waterer|
|Princess Margaret Hospital for Children||Dr André Schultz|
|Northern Territory||Alice Springs Hospital||Prof Graeme Maguire|
Following the initial stage to demonstrate the system works well, a broader roll-out of registrations from a mix of metropolitan, rural and remote healthcare centres in Australia is planned to commence in 2018.
If you would like to register your interest to be kept up-to-date on the Australian Bronchiectasis Registry’s progress you may like to contact the ABR Project Manager, Enna Stroil-Salama directly:
Phone:+61 07 3251 3629
Lung Foundation Australia invites financial support to assist us to undertake this important research
The Respiratory Infectious Disease (RID) program, including the establishment of an Australian Bronchiectasis Registry, is generously supported by the following:
|Seed funding was generously received from: |