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Data Registry

Cystic Fibrosis Australia funds the management and ongoing development of the Australian Cystic Fibrosis Data Registry (ACFDR).

In 1996 work began on developing the Australian Cystic Fibrosis Data Registry (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.

Cystic Fibrosis Australia 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.

 

2020 Publications

1. Cosgriff R, Ahern S, Bell SC, Brownlee K, Burgel PR, Byrnes C, et al. A multinational report to characterise SARS-CoV-2 infection in people with cystic fibrosis. J Cyst Fibros. 2020;19(3):355-8.

2. Earnest A, Salimi F, Wainwright CE, Bell SC, Ruseckaite R, Ranger T, et al. Lung function over the life course of paediatric and adult patients with cystic fibrosis from a large multi-centre registry. Sci Rep. 2020;10(1):17421.

3. McClenaghan E, Cosgriff R, Brownlee K, Ahern S, Burgel PR, Byrnes CA, et al. The global impact of SARS-CoV-2 in 181 people with cystic fibrosis. J Cyst Fibros. 2020.

4. Ratnayake I, Ahern S, Ruseckaite R. A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis. BMJ Open. 2020;10(10):e033867.

5. Ratnayake I, Ahern S, Ruseckaite R. Patient-Reported Outcome Measures in Cystic Fibrosis: Protocol for a Systematic Review. JMIR Res Protoc. 2020;9(5):e15467.

Newsletters

ACFDR Newsletter May 2021 >

ACFDR Newsletter November 2020 >

ACFDR Newsletter July 2020 >

ACFDR Newsletter May 2020 >

2020

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.

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2019

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.

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2017

Welcome to the 19th Annual Report for the Australian Cystic Fibrosis Data Registry (ACFDR) encompassing the health outcomes and information garnered in 2017.

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2016

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.

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2015

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.

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2014

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.

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Data Access Request Form (for researchers)

Permission is required to access this report. Please download, complete and return the below form for a copy of this report.

Request Access>

 

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