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 1^st 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.

• If you would like to support CFA’s Peer Review initiative please donate here>
• If you would like to stay up to date with the work Monash do on the data registry, sign up to receive their e-newsletter>

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 November 2020 >

ACFDR Newsletter July 2020 >

ACFDR Newsletter May 2020 >