Australian Cystic Fibrosis Data Registry (ACFDR)

Registry Custodian: Dr Susannah Ahern
Head, Registry Sciences Unit
Registry Data Manager: Dr Rasa Ruseckaite
Email: rasa.ruseckaite@monash.edu
Phone: +61 3 9903 0437
Registry Coordinator: Madeleine Gardam
Email: med-acfdregistry@monash.edu
Phone: +61 3 9903 1656
Clinical Lead: Professor Scott Bell
Executive Director – Research, Metro North Hospital and Health Service
Senior Physician – Department of Thoracic Medicine, The Prince Charles Hospital (QLD) 
Purpose / aims: At its establishment in 1996, aims of the registry were stated to be:
  • To accurately characterise the demographics, morbidity and mortality of the CF population in Australia, and monitor over time
  • To use the information collected to increase awareness and advocate for increased resources, including funding of the data registry
  • To improve quality of CF patient care, by comparisons with international CF registers, and comparisons between CF centres in Australia
  • To provide a useful data resource for CF researchers
  • To conduct multi-centre trials with other Australian and international CF centres
  • To analyse data obtained to identify trends, monitor new organisms, effects of treatments, etc.
Population captured: Persons with cystic fibrosis who attend specialist CF treatment centres in Australia. Almost universal coverage of Australians with CF is achieved.
Outcomes collected: Lung function, BMI status, pulmonary infections, organ transplant, death, all of which can be analysed by demographic, genotypic and phenotypic characteristics, co-morbidities, antibiotic and other therapies prescribed and treatments delivered.
Funding source: Cystic Fibrosis Australia
Website:www.cysticfibrosis.org.au/data-registry