Updated on 28 May 2018

Please read the privacy notice for the ECFS Patient Registry.

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 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;
  • Identification of groups of patients who could take part in research studies and clinical trials.
  • 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 is planning to maintain the ECFSPR for the foreseeable future and keep the data keep 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. You can access the ECFS privacy policy here.

In case the patient desires to withdraw consent to use his/her data for the ECFSPR, he/she needs to contact the CF center, who will need to inform us in writing to delete the data. Since we only receive and store anonymised data, we cannot identify directly in our system.

In case you the patient expresses the wish to receive his/her data, the ECFSPR advises to contact the local clinical team to discuss the request. Since we only receive and store anonymised data, we cannot identify directly in our system.