The UK CF Registry’s Annual Data Report for 2016, published today, reveals that 50% of those born with CF today are expected to live to 47 or more (the median predicted survival). The median age of people with CF in the UK stands at 20, with 60.4% of the overall CF population aged 16 or over.
The overall number of people living with CF in the UK has also increased, despite the total registered on the database appearing to ‘shrink’ to 10,461, due to quality improvement work leading to a more accurate way of following up on patients.
Other trends revealed include a 20% rise in the number of people with CF who use exercise as part of their physiotherapy, and a small continued drop in the number of people with chronic Pseudomonas aeruginosa.
The UK CF Registry, which now contains complete data for more than 95% of the UK CF population, is a vital tool for improving clinical care, stimulating research and monitoring drug safety.
This year marks the 10th anniversary of the Cystic Fibrosis Trust taking over maintaining and hosting the Registry, which is an essential tool for improving care for people with cystic fibrosis.
Rebecca Cosgriff, UK CF Registry Lead at the Cystic Fibrosis Trust, said: “The UK CF Registry continues to set a gold standard for patient registries, using innovative methods to inform service design, monitor drug safety, and trial new therapies. We are very grateful to all the people with CF and their families whose consent means we are able to maintain this world-class resource and publish these vital reports.”
See the 'At a glance' summary or read the full report at cysticfibrosis.org.uk/registryreports.