2024 Registry report highlights

There are over 11,000 people with CF living in the UK – and over 11,000 unique stories to tell.

Key demographics

• There were 11,381 registered people in 2024.
• The median age was 23, with 65.2% aged 16 or over.
• Most people received their clinical care in England (9,436), followed by Scotland (969), Wales (483), and Northern Ireland (493).
• The majority were White (94.6%), with 3.4% Asian, 0.3% Black, 1.2% Mixed, and 0.6% Other.
• 164 new diagnoses were made in 2024. 123 of these were identified by newborn screening.
• 51 deaths were reported in the annual review year. The median age at death was 42 years.

Lung health

Median FEV₁% predicted at annual review

• 10-year-olds: 91% (2019) → 97% (2024)
• 20-year-olds: 72% (2019) → 89% (2024)
• 30-year-olds: 60% (2019) → 80% (2024)
• 40-year-olds: 61% (2019) → 66% (2024)

FEV₁% is reported for people who have not had a lung transplant.

Intravenous (IV) antibiotics in 2019 and 2024

In 2019, 44.5% of people had at least one course of IV antibiotics (38% in hospital and 23.1% at home), while in 2024, 20% of people had at least one course of IV antibiotics (17% in hospital and 8.6% at home).

Complications

The Registry has an important role in summarising the health of the UK’s CF population, and in ensuring that it is responsive to changing times. Greater understanding of comorbidities in the adult CF population will be key, and will play an important role in shaping paediatric and adult CF care.

– Dr Gwyneth Davies, UCL Great Ormond Street Institute of Child Health

CF diabetes

Ages 10–15: 13.1% (2019) → 9.2% (2024)
Ages 16+: 33.9% (2019) → 32.3% (2024)

In both 2019 and 2024, 1% of people under 10 had CF diabetes.

Liver and gastrointestinal complications

Liver disease: 14% (2019) → 19% (2024)
Raised liver enzymes: 10% (2019) → 13% (2024)
Gastro-reflux disease: 17% (2019) → 16% (2024)
Distal Intestinal Obstruction Syndrome: 7% (2019) → 3% (2024)

Some complications are not changing or are increasing in adults aged 16 and over, including:

• Sinus disease (11.2%)
• Gastro-oesophageal reflux disease (GORD) (21.8%)
• Osteopenia (16.7%)
• Depression (7.3%)
• Hearing loss (5.7%)
• Hypertension (3.3%)

Medications

Inhaled therapies in 2024

• 57.9% are taking DNase
• 36.1% are on an inhaled antibiotic
• 29.0% are on hypertonic saline

➡️ 27.8% (2,895 people) are not using any inhaled medications.

💬 The proportion of people taking all three types of inhaled medication has fallen from 22% in 2019 to 12.3% in 2024.

Pancreatic enzyme supplementation

People taking pancreatic enzyme supplements:

• 2014: 85.1%
• 2019: 82.7%
• 2024: 79.9%

📉 Slightly fewer people are now using enzyme supplements compared with previous years.

CFTR modulator use in 2024

• Overall, 85% of people with an annual review had a CFTR modulator record in 2024.
• 80.8% of people were taking elaxacaftor/tezacaftor/ivacaftor (Kaftrio®).
• Among children aged 6 years and younger, 77.6% had at least one record of CFTR modulator use as of December 2024.
• For those aged 6 and over:
  • 10% had no record of CFTR modulator use.
  • 3.6% were thought to be ineligible by genotype and never took a CFTR modulator.
  • 6.5% had potentially eligible genotypes but had never taken a CFTR modulator.

Although many people with CF and their families will be able to identify with the evolving demographics, continued improvement in lung function, and impressive gains in median predicted survival at the population level, it’s always important to remember that there remain people with CF for whom CFTR modulators are not a treatment option.

– Dr Gwyneth Davies, UCL Great Ormond Street Institute of Child Health

Predicted survival

Half of people born today with CF are predicted to live to at least 66.2 years. Sadly, this means that half won't.

CF is still damaging and shortening lives. But we won't stop until CF does. We'll keep funding research, campaigning for better care, and providing support to our community every step of the way.

Your support is what makes that happen. Unite with us today and help us get closer to a life unlimited.

Get involved with Cystic Fibrosis Trust

Thank you

The UK CF Registry is one of the most advanced health databases in the world – but we wouldn't be able to do our cutting-edge work without the participation of people living with CF and their CF teams. 

We would like to thank people with cystic fibrosis and their families for their support, as well as anyone who has generously donated to Cystic Fibrosis Trust. We would also like to express our gratitude to the UK cystic fibrosis centres and clinics,  for their continued dedication to obtaining consent and submitting data to the Registry.

I extend my deepest gratitude to everyone who supports the Registry – from those living with CF and their families who generously consent to sharing their data to the NHS care teams and administrators who collect and enter the data. Your participation is essential to shaping a life unlimited by cystic fibrosis.

– David Ramsden, Chief Executive

If you’ve been affected by the information in this report, please reach out to the Trust Helpline for support.

This year's Registry annual report was prepared by the UK CF Registry team at Cystic Fibrosis Trust; Jamie Duckers, Consultant Respiratory Physician, Cardiff and Vale University Health Board; Gwyneth Davies, Clinical Associate Professor, UCL Great Ormond Street Institute of Child Health; and the UK CF Registry Steering Committee.

Last updated: October 2025