Update 20 June 2018
Data Request - Application Form
The ECFS Patient Registry (ECFSPR) has been expanding since the first data collection in 2005 and new centres are joining us on a regular basis. The ECFSPR database contains data of more than 42,000 patients with CF living in 32 countries, and longitudinal data from 2008 to 2015. This large database with anonymised data, according to agreed inclusion criteria, definitions and coding and reflecting the natural heterogeneity in CF manifestation across the pan-European countries, is used for annual reports with key demographic and clinical data on a country level. We encourage the use of these important data for scientific research and welcome applications for data.
All applications will be reviewed by the Scientific Committee. Applications from the Industry will be reviewed by the Clinical Trials Network (CTN) as well. Based on the recommendation of the Scientific Committee, the Steering Group (composed of national representatives of the countries that contribute data to the ECFSPR) will make a decision on the approval of the data request. This decision will be final. For further information on the procedure, please read the Code of Conduct.
Applications from non-European countries must ensure an adequate level of protection (Directive 95/46/EC (TBC) chapter IV, article 25.1). Any application that involves anything but aggregated data must be approved by the Danish Data Protection agency before release of data.
Applicants will be asked to sign an agreement in which they declare that the data will be used for the sole purpose indicated in the application and shall not be kept for longer than necessary for that purpose or purposes. If you wish to make an application for data please contact the Executive Coordinator of the ECFSPR (firstname.lastname@example.org).
The ECFSPR supplies only anonymised data in a secured file. For data applications that request country specific data the ECFSPR will ask the country coordinators/centre directors if they prefer to extract the data via their own registry or via the ECFSPR.
All applications will be handled as received. Please take into account that the process of approval and producing the requested dataset will take a minimum of twenty working days.