Updated on 15 April 2019

The ECFS Patient Registry (ECFSPR) collects anonymised demographic and clinical data from people with cystic fibrosis (CF) in Europe, in accordance with agreed inclusion criteria and definitions (please refer to the Variables and Definitions List.
Only anonymised data is collected, which means that we cannot identify individuals. The ECFSPR only collects data from patients who have given their explicit consent to their local clinical team or national registry to register and send their data to the ECFSPR.
The information is used to measure, survey and compare aspects of CF and its treatment in the participating countries with the aim to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning. Examples are:

The ECFS Patient Registry (ECFSPR) collects anonymised demographic and clinical data from people with cystic fibrosis (CF) in Europe, in accordance with agreed inclusion criteria and definitions (please refer to the Variables and Definitions List. www.ecfs.eu/sites/default/files/general-content-files/working-groups/ecfs-patient-registry/ECFSPR_VariablesDefintions_vs4.6.pdf
Only anonymised data is collected, which means that we cannot identify individuals. The ECFSPR only collects data from patients who have given their explicit consent to their local clinical team or national registry to register and send their data to the ECFSPR.

The information is used to measure, survey and compare aspects of CF and its treatment in the participating countries with the aim to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning. Examples are:

  • The publication of Annual Data Reports and At-a-glance Reports with demographic and clinical outcomes across Europe;
  • The use of data for epidemiological research and prognostic analyses to forecast trends in CF;
  • The preparation of the landscape for clinical trials and specific research studies;
  • The monitoring of safety and effectiveness of CF treatments.

The release and use of any data from the ECFSPR is handled according to a standard operating procedure: a formal application for data will be reviewed by the ECFSPR Scientific Committee, who will advise the ECFSPR Steering Committee (consisting of country representatives) to approve / not approve the application for data. For more information please click here.

The Data Controller, as required by the Data Protection Act, is Hanne Vebert Olesen MD PhD, Aarhus University Hospital, Denmark, on behalf of the ECFS. If you have any questions about the use of ECFSPR data, please contact ecfs-pr@uzleuven.be

The ECFS plans to maintain the ECFSPR for the foreseeable future and keep the data as long as the ECFSPR is active. Queries about how the ECFSPR protects data should be directed to our Data Protection Office by emailing ecfs-pr@uzleuven.be. More information about the ECFS privacy policy you will find here.

In case anyone inside the ECFSPR organisation, including all data-processors, notices, is informed, or suspects a security breach, he/she must take immediate action to stop the breach and prevent further spread of data. The ECFSPR Coordinator, ecfs-pr@uzleuven.be, +32 484 443 435, should be informed immediately. Please refer for the steps to take to the procedure for security breach here.

More information about the data-security applied to the data-collection software you will find here.

In case the patient desires to withdraw consent to use his/her data for the ECFSPR, he/she needs to contact the local CF centre to discuss the request. The local clinical team needs to inform the ECFSPR Service Desk, servicedesk@ecfregistry.eu, in writing to delete the data. Since we only receive and store anonymised data, we cannot identify patients directly in our system.