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.
If you would like to stay up to date with the work the Monash do on the data registry