Multiple projects in cystic fibrosis data registry

Cystic Fibrosis (CF) is a common, genetically acquired, life-shortening chronic illness affecting primarily the lungs and digestive system. The Australian Cystic Fibrosis Data Registry (ACFDR) is a national registry that was established in 1998, and collects clinical data on patients with CF attending specialist clinics. It captures >95% CF patients enrolled in the registry, and at the end of 2022 the ACFDR held records of 3738 Australians diagnosed with CF. We are offering a range of projects to suitable Higher Degree Students to answer the following questions: 1. What has changed for people who have started on new disease modifying drugs ? 2. What impact have new had on CF outcomes? E.g. rate of decline in FEV1 or employment status or pregnancies. 3. How does Australia sit in comparison with other countries in terms of CF outcomes? Qualitative interviews with patients and clinicians and quantitative analysis of clinical registry data may be required to answer these questions. No previous knowledge or expertise is required.