Clinical Care Enhancements For The Australian Cystic Fibrosis Data Registry
17/Dec/2009
Cystic Fibrosis Australia is delighted to announce enhancements to the Australian Cystic Fibrosis Data Registry (ACFDR or the Registry).
Cystic Fibrosis Australia is delighted to announce enhancements to the Australian Cystic Fibrosis Data Registry (ACFDR or the Registry). These enhancements have been developed due to requests by Cystic Fibrosis (CF) specialist clinicians and will assist patient care.Background on the Registry
The Australian Cystic Fibrosis Data Registry is a clinical quality registry that has been maintained since 1998 by Cystic Fibrosis Australia in association with Australia’s cystic fibrosis specialist clinicians.
The registry provides clinical, analytical and benchmarking information to contributing centres, comprising all major and most other specialist CF treatment centres in Australia. Currently, information is submitted by clinical teams at 22 hospitals in capital cities and regional centres, with the consent of patients or their legal guardians. In 2007, the ACFDR held records of 2639 patients, estimated to be over 90 per cent of people with CF in Australia.
The registry operates as an online database, accessible to accredited system users from any internet-connected computer.
What will clinical care enhancements provide?
There are three key enhancements being made to the ACFDR:
1. More comprehensive and user-friendly patient reports available on demand, directly from the online database.
2. Ability to transfer access to an individual patient’s information in the Registry to another treatment centre.
3. Introduction of a ‘Roadmap’ to guide clinicians in efficiently accessing information.
Who will benefit?
The benefits of these enhancements will be far reaching. They will assist clinical teams by allowing greater access to superior information, time efficiencies in data management and via the implementation of the “road map” greater system usability. The benefit to patients will result from care teams having access to high quality patient history information and access to comparative information. Finally ACFDR will also benefit due greater accuracy of information entered and the increased incentives for busy care teams to submit patient information, ultimately improving the coverage of information stored for descriptive, analysis and research purposes.
What does it mean to CF clinicians?
“Cystic fibrosis is a severe chronic disease predominately affecting the lungs and digestive system and ultimately leads to a shortened life expectancy. Fortunately with modern treatment more and more children are surviving through to adulthood. In fact almost half of Australia's CF patients are now of adult age (18 years or more) and so require adult services.” said Dr Peter Cooper of The Children’s Hospital Westmead.
“The new developments in the national CF data registry developed and run by CFA will now allow for a seamless and rapid transfer of large quantity of vital health data from one centre to another. This is a major advance as this will reduce paperwork, save time, avoid potential misinformation and provide an immediate summary of several years’ clinical data when patients transfer from a children’s clinic to an adult clinic.” he said
Cystic Fibrosis Australia is grateful to all supporters of the Cystic Fibrosis Data Registry for their ongoing assistance in enabling CFA to further develop this important tool.
Kind regards
Terry Stewart
Chief Executive Officer
Cystic Fibrosis Australia
www.cysticfibrosis.org.au
ph: 1800 635 008
