About 32,000 people in the US and >100,000 people worldwide have CF.[3]Cystic Fibrosis Foundation. 2021 patient registry annual data report. Bethesda, MD: Cystic Fibrosis Foundation; 2022.
https://www.cff.org/medical-professionals/patient-registry
The incidence among white people is estimated to be between 1 in 3000 and 1 in 6000; the incidence is lower among people of African, native American, Hispanic, and Asian descent.[4]Scotet V, Gutierrez H, Farrell PM. Newborn screening for CF across the globe - where is it worthwhile? Int J Neonatal Screen. 2020 Mar;6(1):18.
https://www.doi.org/10.3390/ijns6010018
http://www.ncbi.nlm.nih.gov/pubmed/33073015?tool=bestpractice.com
[5]Southern KW, Munck A, Pollitt R, et al. A survey of newborn screening for cystic fibrosis in Europe. J Cyst Fibros. 2007 Jan;6(1):57-65.
https://www.doi.org/10.1016/j.jcf.2006.05.008
http://www.ncbi.nlm.nih.gov/pubmed/16870510?tool=bestpractice.com
CF is most common among people of European descent.[4]Scotet V, Gutierrez H, Farrell PM. Newborn screening for CF across the globe - where is it worthwhile? Int J Neonatal Screen. 2020 Mar;6(1):18.
https://www.doi.org/10.3390/ijns6010018
http://www.ncbi.nlm.nih.gov/pubmed/33073015?tool=bestpractice.com
CF incidence has decreased since the advent of newborn screening (and may be associated with population-based carrier screening).[6]Hale JE, Parad RB, Comeau AM. Newborn screening showing decreasing incidence of cystic fibrosis. N Engl J Med. 2008 Feb 28;358(9):973-4.
http://www.ncbi.nlm.nih.gov/pubmed/18305279?tool=bestpractice.com
[7]Scotet V, L'Hostis C, Férec C. The changing epidemiology of cystic fibrosis: incidence, survival and impact of the CFTR gene discovery. Genes (Basel). 2020 May 26;11(6):589.
https://www.mdpi.com/2073-4425/11/6/589/htm
http://www.ncbi.nlm.nih.gov/pubmed/32466381?tool=bestpractice.com
[8]Castellani C, Picci L, Tamanini A, et al. Association between carrier screening and incidence of cystic fibrosis. JAMA. 2009 Dec 16;302(23):2573-9.
https://www.doi.org/10.1001/jama.2009.1758
http://www.ncbi.nlm.nih.gov/pubmed/20009057?tool=bestpractice.com
[9]Castellani C, Massie J. Newborn screening and carrier screening for cystic fibrosis: alternative or complementary? Eur Respir J. 2014 Jan;43(1):20-3.
https://www.doi.org/10.1183/09031936.00125613
http://www.ncbi.nlm.nih.gov/pubmed/24381320?tool=bestpractice.com
The Cystic Fibrosis Foundation Patient Registry reports that 1017 new cases of CF were diagnosed in the US in 2006, compared with 779 new cases in 2021 (of which 21.2% and 64.4%, respectively, were detected by the newborn screening program).[3]Cystic Fibrosis Foundation. 2021 patient registry annual data report. Bethesda, MD: Cystic Fibrosis Foundation; 2022.
https://www.cff.org/medical-professionals/patient-registry
Traditionally thought of as a childhood disease, advances in the management of CF mean that life expectancy is increasing. There are now more adults than children with CF in developed countries.[7]Scotet V, L'Hostis C, Férec C. The changing epidemiology of cystic fibrosis: incidence, survival and impact of the CFTR gene discovery. Genes (Basel). 2020 May 26;11(6):589.
https://www.mdpi.com/2073-4425/11/6/589/htm
http://www.ncbi.nlm.nih.gov/pubmed/32466381?tool=bestpractice.com
In the US, the median age at death was 33.9 years in 2021, and it is anticipated that patients born between 2018 and 2022 will live to 56 years.[3]Cystic Fibrosis Foundation. 2021 patient registry annual data report. Bethesda, MD: Cystic Fibrosis Foundation; 2022.
https://www.cff.org/medical-professionals/patient-registry
[10]Cystic Fibrosis Foundation. 2022 Cystic Fibrosis Foundation patient registry highlights. Bethesda, MD: Cystic Fibrosis Foundation; 2023.
https://www.cff.org/medical-professionals/patient-registry
Primary lung disease and issues related to lung transplantation are the most common causes of death.[3]Cystic Fibrosis Foundation. 2021 patient registry annual data report. Bethesda, MD: Cystic Fibrosis Foundation; 2022.
https://www.cff.org/medical-professionals/patient-registry
However, posttransplant survival remains stable, with 85.3%, 67%, and 54.3% surviving to 1, 3, and 5 years, respectively.[11]Valapour M, Lehr CJ, Schladt DP, et al. OPTN/SRTR 2021 annual data report: lung. Am J Transplant. 2023 Feb;23(2 suppl 1):S379-S442.
https://www.doi.org/10.1016/j.ajt.2023.02.009
http://www.ncbi.nlm.nih.gov/pubmed/37132345?tool=bestpractice.com
Pseudomonas aeruginosa is a common respiratory tract infection that affects more than 60% of adults. Its overall prevalence is 29.8% and 49.6% among patients with CF in Europe and the US, respectively.[12]Salsgiver EL, Fink AK, Knapp EA, et al. Changing epidemiology of the respiratory bacteriology of patients with cystic fibrosis. Chest. 2016 Feb;149(2):390-400.
http://www.ncbi.nlm.nih.gov/pubmed/26203598?tool=bestpractice.com
[13]Hatziagorou E, Orenti A, Drevinek P, et al. Changing epidemiology of the respiratory bacteriology of patients with cystic fibrosis-data from the European cystic fibrosis society patient registry. J Cyst Fibros. 2020 May;19(3):376-83.
https://www.doi.org/10.1016/j.jcf.2019.08.006
http://www.ncbi.nlm.nih.gov/pubmed/31492646?tool=bestpractice.com
Despite high prevalence, aggressive treatment has been associated with a slight decrease over recent years.[14]Reynolds D, Kollef M. The epidemiology and pathogenesis and treatment of Pseudomonas aeruginosa infections: an update. Drugs. 2021 Dec;81(18):2117-31.
https://www.doi.org/10.1007/s40265-021-01635-6
http://www.ncbi.nlm.nih.gov/pubmed/34743315?tool=bestpractice.com
[15]Langton Hewer SC, Smith S, Rowbotham NJ, et al. Antibiotic strategies for eradicating Pseudomonas aeruginosa in people with cystic fibrosis. Cochrane Database Syst Rev. 2023 Jun 2;6(6):CD004197.
https://www.doi.org/10.1002/14651858.CD004197.pub6
http://www.ncbi.nlm.nih.gov/pubmed/37268599?tool=bestpractice.com