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