Australian Cystic Fibrosis Data Registry (ACFDR)

Academic Leads:Professor Susannah Ahern
Head, Clinical Outcomes Data Reporting and Research Program

Dr Rasa Ruseckaite
Deputy Academic Lead
Clinical Lead: Professor Scott Bell, Respiratory Physician
Registry Contact: Marisa Caruso, Registry Coordinator
Email: med-acfdregistry@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 95% 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; Vertex Pharmaceuticals
Year established: 1996 (data collection commenced in 1998)
Website:cysticfibrosis.org.au/dataregistry
Reports:

2020 Annual Report (PDF, 7.91MB)
2019 Annual Report (PDF, 4.68MB)
2017 Annual Report (PDF, 3.16MB)
2016 Annual Report (PDF, 6.18MB)
2015 Annual Report (PDF, 5.09MB)