European Cystic Fibrosis Society

European Cystic Fibrosis Society Patient Registry
c/o European Cystic Fibrosis Society
Kastanieparken 7,
7470 Karup

April 11, 2010

Dear all,

We thank you very much for your continuing interest in the European Cystic Fibrosis Patient Registry (ECFSPR) and the EuroCareCF project. The EuroCareCF project has now ended, and the work will be continued under the management of ECFS and the ECFSPR Steering committee.

For those of you who have no national registry so far, we now offer an online software system for entering data to the ECFSPR on a yearly basis. This software replaces the less-than-handy excel spreadsheet, but entails approximately the same variables. Centers using this software will receive an Excel spreadsheet with all the data of your center, and where applicable a representative of your country will receive the national data (see below). In the near future this software will be supplemented by a more elaborate database, that will make it possible to enter data on a clinic-visit basis and furthermore offer graphics, queries etc, that can help your patient management in your daily clinical setting. We will return to you with more information when this software is ready.

For now we welcome you to use the core database to enter data from the year 2008 and 2009 (from Jan 1, 2008 till Dec 31, 2009). In order to access the database, you will need to acquire a username and password from us (including a random European center code for your center). Due to data protection issues we will need confirmation from you that the data you report to the ECFSPR has been collected according to your national data protection laws, and that you are allowed to forward these data anonymously to the ECFSPR.  This confirmation should be in form of:

1.  Permission from the data protection agency, preferably in English, but if not, then in original with a translation by the person requesting the access.

2.  Ethical approval if required for your country, preferably in English, but if not, then in original with a translation by the person requesting the access.

3. Statement from the person requesting the access (see page 3 of this document).

These statements can be submitted for a whole country at a time or for a single center where applicable. If the country has appointed a country administrator we need confirmation from each participating center that this person should be granted access to their data.
For information on the data security specifications and guidelines of the registry please see attached papers (datasecurityECFSPR.doc and guidelinesECFSPR2010.doc), which you may use when applying to your local authorities.

An electronic copy of your permission and the statement (numbers 1 to 3 above) should be emailed to , att. Hanne Vebert Olesen, (scanned picture or pdf file), and also sent by ordinary mail to the ECFS office (ECFS, Kastanieparken 7, 7470 Karup, Denmark, att. Christine Dubois).  After you receive confirmation that this paperwork is accepted, you will be directed to Patrizia Iansa () to receive your center code, username and details on how to log onto the registry and start entering your data.

In case of questions, please feel free to contact us. Questions referring to data protection matters should be sent to Hanne Olesen (); questions referring to technical issues, such as username/password/login problems, should be sent to Patrizia Iansa ()  at the registry help desk.

We look forward to you joining us in building a sustainable and effective European CF Registry, adding to the knowledge of this disease.