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Cystic fibrosis infographic

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Registry figures announced

The cystic fibrosis trust produced an infographic highlighting some key statistics from this year’s UK CF Registry Data Report, to help convey them across social media. It has received 313 likes and 127 shares on Facebook, and 21 retweets and 9 favourites on Twitter. Overall, this has helped it reached 31,118 people.

About the Registry
The Registry tracks the health and treatment of people with cystic fibrosis; information is collected every year from more than 10000 people who receive care at accredited CF centres and agree to participate in the Registry.

The data collected includes area of residence, gender, age, height, weight, CF mutations, pulmonary function test results, medication use and problems (complications) related to cystic fibrosis.

This completely anonymised data set, held on a secure and confidential computer database, is
available to clinicians, researchers, NHS commissioners and to industry, under the scrutiny of the CF Registry Steering Committee.

This data is used to:
facilitate research and development aimed at improving outcomes for people with cystic fibrosis; support the planning and commissioning of cystic fibrosis NHS services at designated centres; enable centre-specific analysis in order to identify best care which can then be instituted across all centres; and support research protocol development by providing information about people with cystic fibrosis who may meet the criteria for a particular research project.

These are some of the key findings in the analysis of the Registry
data for 2013:
• There were 146 deaths reported in 2013, at a median age of 29
years. This means half of the people with cystic fibrosis (CF)
who died in 2013 were older than 29 years.
• The median survival for the CF population is currently 36.6
years, compared to 34.4 in 2009. Out of 146 deaths in 2013, five
were in the under-16 age group.
• In 2013, the median FEV1
in children aged six to 11 years was
greater than 85%.
• There has been a statistically significant* increase in the use of
nebulised drug treatment in 2013 compared to 2008 in all age
groups, which should result in better long-term outcomes.
• There has been a reduction in chronic pseudomonas infection
in 2013 compared to 2008. This reduction was statistically
significant* in several age groups.
• 50 people with cystic fibrosis received a double lung or heart
and lung transplant in 2013, compared to 19 in 2009.

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