Australian Cystic Fibrosis Data Registry (ACFDR)

Academic Lead:Professor Susannah Ahern
Head, Registry Science and Research
Clinical Lead: Professor Scott Bell, Respiratory Physician
Registry Contact: Phoebe Kent
Email: phoebe.kent@monash.edu
Phone: +61 3 9903 1656
Purpose / Aims: The ACFDR aims to accurately characterise the demographics, morbidity and mortality of the CF population of Australia over time, use health information to increase awareness and advocate for patient resources, improve quality of care by reviewing and monitoring trends in outcomes by benchmarking CF centres in Australia and internationally, and monitor the impact of new therapies and changed treatment practices.
Population Captured: All persons diagnosed with cystic fibrosis (CF) who attend participating specialist CF treatment centres in Australia. This is estimated to cover over 90% of patients diagnosed with CF nationally.
Outcomes Collected: Birth and diagnostic data including genetic mutation status, clinical measures such as lung function and BMI status, pulmonary infections, disease complications, treatments, organ transplant, and death.
Funding Source: Cystic Fibrosis Australia
Website:cysticfibrosis.org.au/dataregistry