Bright future for the Australian Cystic Fibrosis Data Registry
16/May/2007
New developments May to August 2007 - The Australian Cystic Fibrosis Data Registry is continuing to develop into a 'state of the art' information and research tool for cystic fibrosis in Australia. While its recent outputs have been slowed by a heavy commitment to development and implementation of the new online version of the data registry during 2006-07, Cystic Fibrosis Australia now looks to an increase in information output and a rapid catch up in timeliness of reporting.
The first Annual Report to be compiled from the online database is for the reference year 2004, and has been released in early May 2007. A high proportion of data has already been submitted for the 2005 reference year, via the new user-friendly web interface that all contributing centres can access. CFA’s plans are for release of the 2005 report ahead of its biennial National Conference, to be held in Sydney in August 2007. A special data registry focus has been included in the conference program.
Other Data Registry developments that will be completed before the August 2007 National Conference will allow contributing centres to use the registry website to:- list and download information submitted to the data registry for their own patients
- access reports showing comparisons with other centres across a range of clinical and treatment indicators
- download individual patient reports summarising most recent patient status and trends in clinical measures, and
- submit data in bulk electronic format to save duplicate data entry for registry components already available in local or shared electronic records.
These developments have been considered by the Data Registry Advisory Committee whose members’ input will be reflected in the design of reports. Security arrangements will ensure that no centre can access patient information other than from their own centre and other centres will not be specifically identified in comparative reports.
CFA is actively pursuing opportunities for the new data registry to be used for a range of research and to contribute to international comparative data about cystic fibrosis.
The Online Data Registry is designed, development and maintained by Prowess Development Pty Ltd, a Sydney based software solution provider specialising in web applications and databases. www.prowessdev.com
Further information can be obtained from Terry Stewart, CEO of Cystic Fibrosis Australia +61 2 98785259 or by email to general@cysticfibrosisaustralia.org.au.
