Australian Cystic Fibrosis Data Registry
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.
At its establishment in 1996, aims of the registry were stated to be:
|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.|
Mr John Oldroyd, Research Fellow
|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||