Nederlandse Cystic Fibrosis Registratie (Dutch Cystic Fibrosis Registry)

The Dutch Cystic Fibrosis Registry is maintained by the Dutch Cystic Fibrosis Foundation (NCFS) and contains pseudonymized medical data on people with cystic fibrosis collected annually from CF centers and published in a public report. The data are used to monitor and improve the quality of CF care, compare centers, and support analyses and research, with data requests submitted to the registry's steering committee via a form obtained by email.