Australian Cystic Fibrosis Data Registry

Information	Using data from Cystic Fibrosis (CF) Centres in Australia the primary aim of the registry is to monitor disease progress in patients with Cystic Fibrosis in Australia. Purpose/Aims At its establishment in 1996, aims of the registry were stated to be: To accurately characterise the demographics, morbidity and mortality of the CF population in Australia, and monitor over time To use the information collected to increase awareness and advocate for increased resources, including funding of the data registry To improve quality of CF patient care, by comparisons with international CF registers, and comparisons between CF centres in Australia To provide a useful data resource for CF researchers To conduct multi-centre trials with other Australian and international CF centres To analyse data obtained to identify trends, monitor new organisms, effects of treatments, etc.
Registry Location	Australia
Registry Participation	The Australian Cystic Fibrosis Data Registry will collect data annually from CF Centres on their patient's health status (eg. height, weight, lung function) and markers of quality of life (eg. days spent in hospital, year at school, employment). The information will be obtained from the hospital medical record. The registry will not contact patients or their families and all the records are kept strictly confidential. If you would like to inspect a blank data form containing all the questions asked, please let us know and we will provide it to you via your clinic.
Registry Contact	Mr John Oldroyd, Research Fellow T: +61 3 9903 1656 E: john.oldroyd@monash.edu
Adding New Patients to Registry	Population captured: Persons with cystic fibrosis who attend specialist CF treatment centres in Australia. Almost universal coverage of Australians with CF is achieved. Contact the Registry Contact for further information.
Please see the website for more information	cysticfibrosis.org.au/what-we-do/data-registry and monash.edu/medicine