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UK CF Registry at-a-glance report 2019

Our ‘at-a-glance’ version of the UK CF Registry Annual Data Report 2019 highlights the key information from the full report, available at cysticfibrosis.org.uk/registryreports.

Active patients

There are 10,655 active patients currently recorded on the Registry. Active patients are people who are currently alive and have had an annual review recorded in the last three years. 10,070 annual reviews were recorded in 2019.

Median age

21 is the median age of people with CF in the UK. 60.6% of the population are aged 16 or over, and 56.7% of the population are aged 18 or over.

Mode of presentation

2,952 (29.3%) people were diagnosed by newborn screening. Aside from newborn screening, the most common three presentations were:

  • Abnormal stools/fatty stool (steatorrhea)/malabsorption 
  • Failure to thrive/malnutrition 
  • Persistent or acute respiratory infection

A breakdown of how many people were diagnosed with cystic fibrosis through the newborn screening program, and the three most common presentations modes

Diagnosis

22 days is the median age that people aged under 16 in 2018 were diagnosed with cystic fibrosis. 14.9of people in the Registry were diagnosed at age 16 or over.

CF population by devolved nation

This map shows how many people with cystic fibrosis there are living in England, Scotland, Wales and Northern Ireland.

CF population by devolved nation

Infections

Pseudomonas

39.4% of people aged 16 and over have chronic Pseudomonas. The median age of people with chronic Pseudomonas was 25 years in 2009, compared to 30 in 2019.

88.7% of people with chronic Pseudomonas were on inhaled antibiotic therapy in 2019, compared to 74.3% in 2009.

Non-tuberculous mycobacterium (NTM)

NTM has reduced from 7.1% to 6.7% in the past year. 53.7% of people recorded as having NTM were being treated, which is 4.5% ​more than in 2018.

Aspergillus

Aspergillus is reported in 15.7% of people.

Allergic bronchopulmonary aspergillosis (ABPA), an immune response to Aspergillus infection, has reduced in prevalence from 15.1% in 2014, to 7.5%.

Median predicted survival age

For people born today, using 2014-2018 data, median predicted survival age is ​49.1 years old. ​The median predicted survival age for females ​(45.7) ​is almost 6 years lower than males ​(51.6)​.

Of the 114 people with CF who died in 2019, the median age of death was 31 years old.

Pregnancy

45 men with CF became fathers.

58 women with CF became mothers.

Mucus thinners

36.8% of people were on hypertonic saline in 2019, compared to 6.9% in 2009.

67.6% of people were on DNase in 2019, compared to 38.4% in 2009.

IV antibioticsNumber of people with CF taking IV antibiotics at home or in hospital

44.5% of people had at least one course of IV antibiotics in 2019. 38.0% of these were administered in hospital, and 23.1% ​were administered at home.

Cystic fibrosis-related diabetes (CFRD)

13.1% of children aged 10-15 were on CFRD treatment.

33.9% of adults 16 and over were on CFRD treatment.

Data graph of number of people with CF who are taking cystic fibrosis-related diabetes treatment

Burden of treatment

80.5% of people with CF were on at least one form of inhaled therapy, and 19.5% of people were on no inhaled therapy.

Breakdown of people with CF who are on at least one form of inhaled therapy, and what types of therapy

People on CFTR modifiers

646 people were on ivacaftor (Kalydeco)

404 people were on lumacaftor/ivacaftor (Orkambi)

197 people were on tezacaftor/ivacaftor (Symkevi)

13 people were on elexacaftor/tezacaftor/ivacaftor (Kaftrio)

Transplant

2009

144 people were being evaluated for a transplant, 79 people were accepted and 19 had a double lung transplant.

2019

241 people were being evaluated for a transplant, 96 people were accepted and 50 had a double lung transplant.


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What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.

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