Friday 8 May 2009

New data shows future is brighter for CF patients

We’re pleased to let you know, just in time for CF Fundraising Week, about new information from our CF Registry. Data on the Registry is collected from patients at over 100 specialist CF centres and clinics throughout the UK.

Results show that median predicted survival has increased from 31 years to 35.2 years. There are now more adults living with CF; 56.7% percent of those in the Registry are over 16 years of age compared with 51.4% in 2004. Encouragingly 73% of adults with CF reported they are currently working or studying.

Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust said: “We have invested a lot of time and money developing the UK CF Registry, and are pleased to see that people with CF are living full, varied and longer lives. However although median predicted survival has increased to 35 years, with many adults living into their 40s, 50s and even beyond, there are still children, teenagers and young adults dying from CF at a young age. Our work to improve clinical care and research into treating and curing CF continues to give better quality and length of life to those with CF.”

Read the full report and the press release at

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