Physical activity data in the Australian Cystic Fibrosis Data Registry

Background and rationale

In Australia, physiotherapy for cystic fibrosis (CF) has traditionally centred on airway clearance techniques. In contrast, practice in many other countries has shifted towards using exercise as a primary airway clearance method, alongside its broader health benefits. While both approaches have merit, little national-level data exists on how physiotherapy and exercise are used in CF management across Australia.

Recognising this gap, a research–clinical partnership set out to explore the feasibility of adding physiotherapy and physical activity measures to the Australian Cystic Fibrosis Data Registry, which tracks key health outcomes for people with CF. Collecting these measures nationally will provide a clear picture of physiotherapy and physical activity practices across Australia, strengthen understanding of registrant outcomes, and enable longitudinal research. Over time, the data will allow examination of links between different treatment approaches and long-term health outcomes, supporting evidence-based policy and clinical decision-making.

A Delphi study with physiotherapists from across Australia reached strong consensus that clinicians were willing to collect and upload survey-based data on physiotherapy techniques and physical activity participation. While fitness testing was of interest, it was considered too resource-intensive for routine care. Following a pilot to refine data collection tools, Cystic Fibrosis Australia approved their inclusion in the national registry. Data collection is now underway in most CF centres nationwide, embedding physical activity measures into routine care.

Outcomes and impact

• Achieved national consensus among CF physiotherapists to collect physical activity and physiotherapy data.
• Developed practical, low-burden tools for data collection in busy clinical environments.
• Secured approval from the Cystic Fibrosis Australia to include new measures in the national registry.
• Rolled out across most CF centres in Australia, creating an embedded national dataset to guide quality improvement in CF care, monitor outcomes, and support future research.

Investment and funding

The work was supported through in-kind contributions from participating CF centres, Cystic Fibrosis Australia, and the Australian Cystic Fibrosis Data Registry Steering Committee. The University of South Australia provided funding to modify the data registry database, creating additional pages so physical activity measures could be collected alongside existing items.

Enablers and lessons learned

Success has been underpinned by strong collaboration between researchers, clinicians, Cystic Fibrosis Australia, and the Australian Cystic Fibrosis Data Registry custodians. Engaging physiotherapists early in the process ensured buy-in and practical input on tool design. Selecting survey-based measures minimised burden, supporting high uptake across centres.

Adding new measures to a national registry requires persistence, phased implementation, and alignment with ethical processes. While resource constraints limit the use of fitness testing in routine care, embedding core physical activity measures provides a valuable foundation for both clinical improvement and research.