Collecting anonymised information about the health and treatment of people with cystic fibrosis, using the UK Cystic Fibrosis Registry, is extremely important for improving care, but the use of this data could be extended to further improve the lives of people with the condition.
Co-led by Professor Diana Bilton (left) and Dr Siobhán Carr (right) at Imperial College London, this Strategic Research Centre (SRC) aims to extend the use and scope of Registry data by linking it with other health and educational records. The study will also collate the data with information provided by people with cystic fibrosis about the impact of the condition on their daily lives to:
- Develop secure and ethical ways to make data-linkages;
- Identify treatments that produce the most benefits in health, survival and quality of life for people with cystic fibrosis at critical stages of their lives; and
- Examine how cystic fibrosis has an impact on education and work and why patients from poorer families experience more health problems.
This research will be instrumental in making the CF community leaders in NHS 'big data', and will create specific economic models. These will be used to improve decision-making on resource use for cystic fibrosis care and provide recommendations to commissioners and CF clinicians, for the best use of therapies and planning of care for the increasing adult population.
For information on data handling please see the Privacy notice for the UK Cystic Fibrosis Registry .
Co-Lead Principal Investigators (PI): Professor Diana Bilton and Dr Siobhán Carr (Imperial College London)
- Dr Stephanie MacNeill (Imperial College London)
- Dr David Taylor-Robinson (University of Liverpool)
- Professor Peter Diggle (University of Liverpool)
- Dr Andrew Fogarty (University of Nottingham)
- Dr Ruth Keogh (London School of Hygiene and Tropical Medicine)
- Dr Sanja Stanojevic (The Hospital for Sick Children, Toronto)
- Dr Tracey Sach (Norwich Medical School)
- Professor Miranda Mugford (Norwich Medical School)
- Professor Paul Cullinan (Imperial College London)
- Professor Deborah Jarvis (Imperial College London)
- Mr David Turner (Norwich Medical School)
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