Dutch CF Registry
The NCFS maintains datafiles with pseudonimized information about people with Cystic Fibrosis (CF). These files are meant to support scientific research and improve CF care and treatment.
NCFS - CF Registry 2024
The CF Registry 2024 contains data of 1688 Dutch people with CF. Outcomes of 2024 are summarized in the infographic, you can also download this infographic. If you want to know more about CF and lung function, use of inhaled antibiotics or the CF centers in the Netherlands, or other data, please feel free to contact Domenique Zomer, the coordinator of the CF Registry: research@ncfs.nl.
Dutch CF Registry – Previous years
Below you will find the Dutch CF Registry reports from previous years:
CF in Europe – facts and figures
The European Cystic Fibrosis Society Patient Registry (ECFSPR) publishes an annual report containing key information about CF in Europe, based on data from all participating countries. In May 2026, the 2024 report was published.
Curious about the main highlights? You can find them here.
Read the full report here.
Data request for the Dutch CF Registry
If you would like to receive data from the CF Registry, please send an email to research@ncfs.nl for the application form. Would you like to know which variables are collected, check this list. Some criteria apply if you hand in a data request (click ‘Lees meer’).
- The applicant submits a research protocol to the Steering Committee and declares its independence on third parties.
- The data leads to a report, preferably in the form of a publication.
- Publication of the data (ultimately) contributes to better care for people with CF.
- The data cannot be traced back to specific centres or individual patients.
- The Steering Committee of the Dutch CF Registration is mentioned in the Acknowledgements.
In addition, each centre will have the opportunity to provide a co-author when data from the entire database (of all centres) is analysed and published. This co-author will be deemed to explicitly meet the minimum requirements for authorship as established by the International Committee of Medical Journal Editors (February 2006). - The data will not be used for marketing purposes.
- The applicant enters into an agreement with the Steering Committee, which contains clear agreements on the involvement of the use of the data, exclusively for the project concerned, for which the application is made.
- If additional work results from the data extraction, this declaration basis (hour allowance coordinator research) must be reimbursed to the NCFS.
After submitting the application form, the NCFR coordinator will perform a first check on completeness and the above conditions, this check takes place within 3-5 working days after submission. Afterwards, the application form is forwarded to the steering committee for assessment, which takes up to two weeks, the applicants are informed about the decision precedingly. If the steering committee does not approve the application, there is the possibility to resubmit after revisions. After approval of the steering committee, the data extraction takes place, this takes a maximum of four weeks after which the data are delivered.
Steering Committee Dutch CF Registration
The steering committee of the Dutch CF Registration is chaired by Patrick Berends (COO) and coordinated by dr. Domenique Zomer (CSO). The rest of the steering committee members are (pediatric) pulmonologists from each center and a member from each of the following disciplines: a gastroenterologist, a dietitian, a pharmacist, a physiotherapist, a medical social worker, a transplant doctor, a medical microbiologist, a (pediatric) nurse and an ENT doctor.