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UK Cystic Fibrosis Registry receives grant to improve transparency of health data
The UK Cystic Fibrosis Registry has been awarded a £15,000 grant which aims to improve transparency of health data access processes. The initiative, which was launched by Health Data Research UK (HDR UK) and funded by the Medical Research Council (MRC), has this week announced the 19 projects which have been awarded funding. These projects aim to improve the accessibility of information about data access processes for researchers and for the public.
The grant will be used to improve the transparency of Registry processes for accessing the data from the UK CF Registry. This is key in enabling researchers to have a better understanding of our process, which in turn will make the process of data access requests run more efficiently and ensure that we are meeting standards.
The UK Cystic Fibrosis Registry receives over 40 data requests every year. This data is vitally important in improving the lives of people with CF, and can help aid research, monitor the safety of new drugs and guide quality improvement at care centres. We look forward to using this grant to make the sure the process of accessing data runs as smoothly as possible so more people with CF can benefit from the Registry.
Mary Kisanga, Head of Registry Operations at Cystic Fibrosis Trust
What is the UK Cystic Fibrosis Registry?
The UK Cystic Fibrosis Registry is a secure centralised database, sponsored and managed by Cystic Fibrosis Trust. CF care teams enter data at every specialist centre and clinic across the UK, with over 99% of people with CF consenting to their data being submitted.
For more information on the Registry, click here
2022 Registry Report
Last month, we published our latest Registry report for 2022, with key highlights including improvements in lung function, reduced numbers of IVs and 140 women with CF having babies.
To read the latest Registry report, click here
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives – and we won’t stop until everyone can live without limits imposed by CF.