Cystic fibrosis

Cystic fibrosis (CF) is an inherited disease, which is most common in white children and young adults, although it can affect people of any race.

It used to be thought of as a disease of the lungs and digestive system, but it is now known to affect most organs in the body. With improvements in diagnosis and care, life expectancy is increasing progressively and CF has become a disease of adults.

“The prognosis for cystic fibrosis has been transformed by the advent of highly effective modulator treatment, albeit these medications are very expensive. It is thus essential that diagnosis is made early by screening, and all countries have complete ascertainment of cases of cystic fibrosis and their genetics. We also need to ensure equality of access to these medications in all countries so all eligible patients can benefit, and that cost is not allowed to be a barrier.” Professor Andy Bush, Professor of Paediatrics and Paediatric Respirology, National Heart and Lung Institute, and Imperial Centre for Paediatrics and Child Health, Imperial College, Consultant Paediatric Chest Physician, Royal Brompton & Harefield NHS Foundation Trust.

Cystic fibrosis in numbers

in Europe in 2018
(40 countries excluding Kazakhstan, Kyrgyzstan, Israel, Turkey)

The charts below present the data available for cystic fibrosis (CF)in Europe.

Incidence data is taken from a 2020 study that provided estimates for 12 European countries. Incidence data was reported as ratios and has been converted to rates per 100,000. Please note, the estimates lack precision as the ratios appear to have been rounded up to the nearest hundred and were sometimes reported as a range.

Prevalence data was taken from a 2022 study that obtained data from CF registries, PubMed literature searches and expert elicitation, where experts were asked to estimate numbers.  The rate was reported per 10,000 people, and this has been converted to rate per 100,000 people by multiplying by 10.  Data were reported for 44 European countries, and a European subtotal reported, which excluded countries in central Asia (Kazakhstan, Kyrgyzstan, Israel, Turkey).

Studies used:

  1. Scotet V, L’Hostis C, Ferec C. The Changing Epidemiology of Cystic Fibrosis: Incidence, Survival and Impact of the CFTR Gene Discovery. Genes 2020a; 11: 26.
  2. Guo J, Garratt A, Hill A. Worldwide rates of diagnosis and effective treatment for cystic fibrosis.J Cyst Fibros 2022 May; 21: 456-462.

All charts are freely available to download by clicking the three dots in the top right-hand corner. Please reference Lung Facts when sharing.

  • Incidence rate
  • Prevalence rate
  • Prevalence numbers