CF Data Registry
Cystic Fibrosis Australia (CFA) funds the management and ongoing development of the Australian Cystic Fibrosis Data Registry (ACFDR).
In 1996 work began on developing the ACFDR and the working model was released in 1998. CFA is responsible for the funding and data custodianship of the ACFDR and on 1st September 2016 the Monash Data Registry Centre became the new management company. The future of the ACFDR is in great hands and the move will enable new digital and clinical development to be undertaken.
As treatment breakthroughs and innovation continue to make lives better for people with cystic fibrosis (CF) the ACFDR provides both a clinical perspective and the important statistics that help everyone consistently strive to improve patient care.
The ACFDR is a vital tool for the CF community as it stimulates ground-breaking research, supports clinical teams to improve care, monitors the safety of new medicines and through the ACFDR Annual Report, gives people with CF and their families up-to-date information about the condition.
Monash University Registry Unit manages the ACFDR professionally and with a real commitment to improving CF lives. The ACFDR Steering Committee is a talented and knowledgeable group guiding the ACFDR to achieve goals where people with CF can live a life like any other.
CFA would like to thank the CF Centre teams throughout the country who work incredibly hard to ensure that accurate and complete data are provided to the Australian CF Registry every year. We would like to thanks people with CF and their families who selflessly share their health outcomes and information.
Data Access Request Form
Permission is required to access non-identifiable data from the ACFDR. To check your eligibility please download and complete the form.
ACFDR Annual Reports
The Australian Cystic Fibrosis Data Registry (ACFDR) is a critical project for Cystic Fibrosis Australia because it ensures the improvement of clinical outcomes, effectively directs research, enables clinical trials, and highlights areas for advocacy. Indeed, having robust data enables more informed information and better outcomes. The data registry is a critical tool to help better serve Australians living with cystic fibrosis.
Download the latest report HERE>
The Australian Cystic Fibrosis Data Registry (ACFDR) is a critical project for Cystic Fibrosis Australia because it ensures the improvement of clinical outcomes, effectively directs research, enables clinical trials, and highlights areas for advocacy. Indeed, having robust data enables more informed information and better outcomes. The data registry is a critical tool to help better serve Australians living with cystic fibrosis.
Download the latest report HERE>
The Australian Cystic Fibrosis Data Registry (ACFDR) is a critical project for Cystic Fibrosis Australia because it ensures the improvement of clinical outcomes, effectively directs research, enables clinical trials, and highlights areas for advocacy. Indeed, having robust data enables more informed information and better outcomes. The data registry is a critical tool to help better serve Australians living with cystic fibrosis.
Download the latest report HERE>
The Australian Cystic Fibrosis Data Registry (ACFDR) is a critical project for Cystic Fibrosis Australia because it ensures the improvement of clinical outcomes, effectively directs research, enables clinical trials, and highlights areas for advocacy. Indeed, having robust data enables more informed information and better outcomes. The data registry is a critical tool to help better serve Australians living with cystic fibrosis.
This year the 2020 Annual Report of the ACFDR is launched earlier and in a more comprehensive manner than any of the earlier reports in the prior twenty-one years. As you will see the numbers of Australians with CF entered into the Registry has continued to rise and the completeness of data across the dataset is greater than before. This demonstrates wonderful collaboration between the Monash Registry Team, Cystic Fibrosis Australia and all of the CF centres, nationally.
It is with great privilege that the Steering Committee and The Monash Registry team launch the 2019 Annual Report of the Australian Cystic Fibrosis Data Registry (ACFDR). There have been many opportunities but also challenges during the past year which everyone has felt, but despite the obvious distraction of the COVID-19 pandemic the Registry has continued to build in its reach, engagement and utility.
No report available
Welcome to the 19th Annual Report for the Australian Cystic Fibrosis Data Registry (ACFDR) encompassing the health outcomes and information garnered in 2017.
Welcome to the 19th Annual Report from the Australian Cystic Fibrosis Data Registry (ACFDR) for the year 2016. Every year cystic fibrosis (CF) centres gather an enormous amount of incredibly valuable information that informs clinical care and provides data for researchers.
This Annual Report is a testament to the large amount of information gathered by Cystic Fibrosis Centres and the innovative science surrounding the treatment of cystic fibrosis (CF). As treatment discoveries continue to make lives better for people with cystic fibrosis the ACFDR will provide us with a clinical perspective and the important statistics that will continue to improve patient care.
For the first time we have crossed an important demographic threshold: more than half of the cystic fibrosis (CF) population in Australia is adult. So much progress has been made in the last decade and a half in the care and treatment of people with CF. Only one third of Australians with CF were adult in 1998 when the Registry began. Last year the proportion stood tantalisingly close at 49.9 per cent but this report’s finding that this has grown to 51.1 per cent.
ACFDR Newsletters
If you would like to stay up to date with the work the Monash do on the data registry
ACFDR Infographics
Infographic 2022
