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.
The CF Registry 2023 contains data of 1656 Dutch people with CF. Outcomes of 2023 are summarized in the infographic below, you can also download this infographic (png). 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: onderzoek@ncfs.nl.
CF in Europe – facts and figures
The ‘At-A-Glance 2021‘ report was published in June 2023 by the European Cystic Fibrosis Society Patient Registry (ECFSPR). This report shows important information about CF in Europe.
Here you can have a look at the complete report: ‘Patient Registry Annual Data Report 2021‘.
Dutch CF Registry - Previous years
Below you will find the Dutch CF Registry reports from previous years:
Data request for the Dutch CF Registry
If you would like to receive data from the CF Registry, please send an email to onderzoek@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 Dr Jacquelien Noordhoek (CEO, NCFS) and coordinated by Dr Domenique Zomer (Manager Research and Quality of Care, NCFS). 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.