European Cystic Fibrosis Society

EuroCareCF and ECFS Registry Project wins European Prize in disease outcome measurement.

The 5th European Rare Disease International Conference held in Krakow (May 2010 http://www.rare-diseases.eu/2010/index.php) received 100 abstracts from which seventy were conference short listed representing the spectrum of rare disease across Europe.

The Workpackage 2/ECFS Registry group were awarded first prize and we offer our congratulations to the combined efforts of EuroCareCF (http://www.eurocarecf.eu/) and ECFS Patient Registry Group.

Anil Mehta’s presentation on behalf of the European Registry Working Group representing 35 European countries focussed on a key issue for CF care of interest to European Governments: measuring the efficacy of spend within healthcare budgets that is devoted to rare diseases. The conference concluded that CF provides a very good paradigm for rare diseases in general. They are particularly impressed by the focus on easy to measure outcomes and the winning presentation focussed on the bias-free measurement of survival that was a major part of the EuroCareCF programme of activities. The data is now published and a podcast summary is easily accessible in a lay format by visiting the www.lancet.com website and clicking on the audio tab (between collections and conferences) and then clicking the audio archive on March 20th 2010. These are exciting times for the new ECFS Registry with a number of spin off projects being discussed. For example a new link has been set up between the Registry and the Clinical Trials section of the ECFS and these discussions take place every two weeks by tele-conference. Thus, a truly multi national vision for the future of CF combining Registry and Clinical Trials in Europe is now within our grasp after many decades of effort. It is your registry and if any ECFS member wishes to access data, a very simple form is available from the ECFS web site for download and assessment by the Registry Board.