2020 Australian Cystic Fibrosis Data Registry Annual Report

The Australian Cystic Fibrosis Data Registry (ACFDR) has been collecting data on Australian people with CF for over 21 years. The 2020 ACFDR Annual Report includes information relating to over 3500 people with CF, estimated to comprise over 95% of Australia’s CF population. The ACFDR dataset enables reporting in a manner generally consistent with other CF registries, such as those in Europe, Canada, the United Kingdom and the United States.

The ACFDR is funded by Cystic Fibrosis Australia (CFA) and managed by Monash University, under a shared data custodianship arrangement. The registry is actively supported by a multidisciplinary Steering Committee with consumer representation, that leads the strategic direction of the ACFDR, reviews requests for access to ACFDR data, develops and reviews ACFDR policies and procedures, and reviews the quality of outputs from the Registry. The ACFDR Steering Committee provides outstanding leadership and advice across all these areas, and the success of the ACFDR is in large part due to its commitment and expertise.

The 2020 Annual Report is the second report to be developed with data collected via the ACFDR Data Quality Assurance Program, funded by Vertex Pharmaceuticals, that provides CF centres with payment for complete data. This has supported sites to provide very high levels of data completeness. The quality of this Annual Report’s data, with core data elements at around 95% completeness, are a significant enhancement to the overall dataset. This allows the ACFDR to be increasingly confident that the data reported accurately reflects the epidemiological features and clinical outcomes of the Australian CF population. The data items covered by the Data QA program expanded in 2020 to include complications and treatment information, and will continue to expand in 2021 providing further information about life and wellbeing for people with CF.