Quality Outcomes
Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through our clinical improvement programs and research.
We are committed to the goal of extending life expectancy from 47 to 55 years by 2026.
These include the Australian Cystic Fibrosis Data Registry (ACFDR), Peer Reviews, Standards of Care, Infection Control Guidelines, Transition Guidelines and Centre Directors Forums.
CFA is the peak patient body in Australia and supports the broad cystic fibrosis community through advocacy, research, and clinical improvement. A new era of medications is upon us, medications capable of targeting the basic defect in the cells of people with CF. These medications will have an unprecedented positive impact on the lives of people with CF.
> Increased access to a wide-range of high-quality treatments to reduce the burden of the disease.
> Delivery of world-class clinical care with Australian standards setting international benchmarks.
> Enhancing the capability and capacity of research and innovation in Australia into CF.
It is time to plan for the future.
View our 2021 – 2026 Strategic Plan.
CFA released of the first Standards of Cystic Fibrosis Care Guidelines to be published in Australia in 2008. This document has now been updated and the first four chapters have been published, with more to be added in the coming months. The Standards of Care is also a Live document, and will be updated as required.
The Steering Committee worked together to complete the document and deliver to the CF community guidelines relevant to our unique needs in Australia.
The specific areas covered are; Facilities and Staffing, Services, Newly Diagnosed Children, Newly Diagnosed Adolescents and Adults, Outpatient Care, Inpatient Care, Home Therapy, Transition Care, Outreach Services and Care, Transplantation and End of Life Care and the Role of the CF Organisations.
The primary objective of a Peer Review is to inform and improve clinical care. It is well-documented that improved clinical care improves and saves lives.
Each Peer Review involves a team of clinicians, health professionals that review current processes, clinical practices, patient (and family or carer) engagement and outcomes.
In 2023, the Peer Review process will be rolled out digitally, to CF Centres throughout the country.
Peer Reviews in CF centre’s across Australia will see an increase in better care, and create better lives for people with CF.
CFA funds the management and ongoing development of the ACFDR.
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.
Learn More about our Data Registry HERE
Perx is an app that helps you simplify your daily health routine. Managing your medications and forming healthy habits can be tough but Perx helps by making it fun, easy, and rewarding to manage your medications and stick to your schedule.
CFA is proud to offer the app completely FREE for people living with CF.
Visit Perx Health and sign up today.
In 2023, the Parliamentary Friends of Cystic Fibrosis was established.
CFA is proud to support the coordination of these meetings so that stakeholders from all across Australia, including members of Parliament, can come together in one room and discuss the challenges our CF Community face.
If you would like to support, or be a part of the Parliamentary Friends of CF group, please contact us.
CFA leads the national research program, the Australian Cystic Fibrosis Research Trust (ACFRT), by overseeing all administration requirements.
In the last 30 years, the ACFRT has funded more than 300 projects to the value of $6.5 million.
Learn more about the ACFRT HERE.
Contact your Consumer Representative
Did you know?
For each of our projects and programs, we have dedicated consumer representatives who provide input into the work Cystic Fibrosis Australia partake in.
If you would like to submit any feedback or comments to our Consumer Representatives, please complete this form and your reps will take this on board.