Australian Cystic Fibrosis Data Registry (ACFDR)
| Academic Leads: | Professor Susannah Ahern Head, Clinical Outcomes Data Reporting and Research Program Associate Professor Rasa Ruseckaite Deputy Academic Lead |
| Clinical Leads: | Professor Peter Wark Director of Cystic Fibrosis Service, Alfred Health Dr Katherine Frayman Respiratory Paediatrician, Royal Children's Hospital |
| Registry contact: | Isabella Hall, 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/cf-data-registry |
Reports:
