Lives unaffected by cystic fibrosis

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.

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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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2013

The cystic fibrosis population in Australia continues to grow, both in overall numbers and in its proportion of adults – now just a touch under 50 per cent. Continuing strong growth in Australia’s adult CF population, of around 4 per cent per this year, is a feature that will not be news to Directors and staff at the adult CF treatment centres in Australia, but may not be as well recognised in the general community.

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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.

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