Predicting risk for the development of Cystic Fibrosis-Related Diabetes

Project Duration – 2 years

Dr Bernadette Prentice and her team at Sydney Children’s Hospital are leading research to improve the prediction and management of Cystic Fibrosis-Related Diabetes (CFRD), a common complication that worsens lung health, nutrition, and long-term outcomes for people with cystic fibrosis. At present, it is difficult to predict who will develop CFRD, which makes early detection and management challenging.

This project aims to improve the early prediction and prevention of CFRD by using advanced data analysis to explore CFRD in people from Australia and Canada. Specifically, the project will:

• use Australian registry data to identify unique features of people with CFRD
• pinpoint early warning signs that predict who is most at risk of developing CFRD, rapid disease progression, or related complications
• validate this data using Canadian CF registry data
• lay the groundwork for determining which people with CF are at the greatest risk of developing CFRD
• create early opportunities to change clinical care to better understand and prevent CFRD.

Why are improved prediction and management of CFRD needed?

Cystic fibrosis (CF) is no longer just a childhood lung disease — advances in treatment mean people with CF are living longer, healthier lives. However, this progress has revealed a new challenge: more than half of all adults with CF will also develop CFRD. This condition worsens lung health, nutrition, and overall survival, and increases the risk of long-term complications like heart disease. Despite its impact and prevalence, CFRD often goes under-recognised and under-managed in clinical care, creating a critical gap in how we support people living with CF.

Improving the ability to predict and manage CFRD is essential to protect the health gains achieved through new CF treatments. By identifying who is most at risk early in childhood, interventions can be provided sooner and complications prevented, including fewer hospital stays, and improved quality of life. Better prediction tools will also help reduce unnecessary screening and healthcare costs, while supporting more targeted, personalised care as CF becomes a complex adult condition rather than a childhood disease.

What is unique about this project?

This project will use a machine-learning approach to predict CFRD by analysing large-scale Australian and Canadian registry databases. The research team will identify early patterns and high-risk groups that smaller studies cannot detect. This innovative use of data science allows for earlier, more accurate prediction of who will develop CFRD — long before symptoms appear and before current screening guidelines are enacted with annual tests from age 10.

The project also brings together a unique international collaboration of clinicians, geneticists, and data scientists. Their combined expertise will lay the groundwork for a future model of CFRD detection, helping to pinpoint genetic and clinical markers that drive disease progression. This new approach combines cutting-edge technology with real-world clinical care, creating the foundation for personalised prevention and management of CFRD as people with CF live longer, healthier lives.

What is the pathway to moving this into the clinic?

The next stage of this project will focus on translating the research findings into practical clinical tools. Once high-risk groups are identified through registry analysis, the team will develop a clinical dashboard or digital tool that presents real-time patient data and individual CFRD risk profiles. Clinicians will be able to measure and input the data about their specific patient and detect early warning signs to guide timely, targeted interventions and slow or prevent disease progression.

Consulting with consumers, clinicians and community representatives would be an important part of implementing such a digital tool, to ensure it is scientifically sound, clinically useful and user friendly, and can be integrated with existing health care systems.  The ultimate goal is to make this digital tool available during annual reviews and diabetes screening appointments, enabling precision care and improving long-term health outcomes for people with CF.

About Dr. Bernadette Prentice

Dr Bernadette Prentice is a Paediatric Respiratory Physician practising in Sydney and is a fellow of the Royal Australasian College of Physicians. She completed her training in Respiratory Medicine at Sydney Children’s Hospital and The Children’s Hospital at Westmead.

She has a Master’s of Public Health and a PhD in Cystic Fibrosis. Dr Prentice teaches medical students in her role as Conjoint Senior Lecturer in the School of Clinical Medicine at the University of New South Wales.

Dr Prentice has been awarded both The Thoracic Society of New South Wales/ Vertex Paediatric Clinical fellowship award in 2016 and a National Health and Medical Research Council Scholarship to undertake her research in paediatric lung conditions. She was recently awarded the Sydney Children’s Hospitals Network Kids Research Clinical research fellowship – funded by the Sydney Children’s Hospitals Foundation. She has published articles in several peer reviewed journals on wet cough in children, asthma and cystic fibrosis, and has written chapters on children’s lung diseases. She has a special interest in children’s asthma, chronic and recurrent cough and chest infections.