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European data everyone can use!

Registry reports reveal how UK cystic fibrosis statistics match up against Europe.

The UK CF population is characterised by earlier diagnosis, a higher median age, and a higher percentage of people who could benefit from Orkambi compared with Europe, according to the UK ‘at a glance’ digest of the annual European Cystic Fibrosis Society Patient Registry (ECFSPR) report, published today at the ECFS conference in Basel, Switzerland.

The ECFSPR aims to compare cystic fibrosis care across Europe, to help better understand the condition, encourage new European standards of care, support research, and inform public health planning. 

The national newborn screening programme means that the UK is ahead of the curve in terms of diagnosing cystic fibrosis, with a median age of diagnosis of three months against a European average of 3.6 months (and the UK’s 2014 data shows this falling to two months, down from five when the programme was introduced in 2007).

In 2013, the median age of people with CF across Europe was 18.4 years, lower than the 19.9 median age in the UK. This is of particular interest when comparing the prevalence of Pseudomonas aeruginosa, which is 33% in both the UK and Europe, when you might expect the UK to have a higher rate as the risk of cultivating the bacteria increases with age.

As the campaign for access to Orkambi in the UK marches on, the latest figures reveal that 51.3% of the UK CF population carry two copies of the F508del mutation treated by the drug, markedly higher than the European average of 42%.

The UK is one of the biggest contributors to the ECFSPR, with 10,336 people listed; making up almost a third of the total data taken from the registries of 27 European countries in 2013.

Rebecca Cosgriff, UK CF Registry Lead, said: “We are proud to contribute to the fantastic work of the ECFSPR in producing the 2013 Annual Data Report. We hope that our ‘What this means to the UK’ report will raise its profile, and help highlight the importance of international collaborations like this to the cystic fibrosis community here in the UK. The Europe-wide data is powerful both in terms of better understanding CF, as well as interpreting the results from our own UK CF Registry, as this report shows.”

See how the UK compares in: ‘At-A-Glance: what it means for the UK’.