History of the ECFS
In 1969, following an informal meeting held at Interlaken chaired by Prof Ettore Rossi, a European Working Group for Cystic Fibrosis (EWGCF) was formally founded later that year at a satellite meeting held during the 5th International Cystic Fibrosis Conference in Cambridge. Prof Ettore Rossi was the EWGCF’s first chairman. The purpose of the EWGCF was to provide an annual forum where people from the various disciplines but with a common interest in CF could meet, present and discuss their latest findings. The first annual meeting of the EWGCF was in the following year (1970) in Stockholm on August 24-25. The local organisers were Prof Bertil Lindquist and Hans Kollberg. In 1997, the board proposed an official transformation of the EWGCF to a Society. This change together with a new constitution was approved at the Annual General Meeting held during the 21st European CF conference in Davos, June 1997. The first President of the ECFS was Prof. Niels Høiby. (Note: the Society was first called the European Society for Cystic Fibrosis (ESCF) but as the initials were the same as another group, the name was changed at the next annual conference in Berlin).
In 2004, the ECFS took over the responsibilities for another annual conference which is entirely dedicated to basic science. These conferences are characterised by active discussion of data and ideas at the forefront of research on CF and CFTR, in an informal, co-operative environment. The ECFS would like to acknowledge the enormous contribution of Prof. Margarida Amaral in establishing these conferences on the international stage.
The Journal of Cystic Fibrosis (JCF) was first published in 2002 with Dr. Harry Heijerman being the first Editor-in-Chief. The JCF is the official journal of the European Cystic Fibrosis Society and is devoted to promoting the research and treatment of cystic fibrosis. To this end the journal publishes original scientific articles, editorials, case reports, short communications and other information relevant to cystic fibrosis. In 2009, the ECFS was proud to announce the first impact factor allocated to the JCF of 1.550. By 2013, the ECFS was able to report a 2012 impact factor of 2.873.
Recognising a need to develop standardised European documentation for CF, the Society has been organising regular consensus meetings over a number of years. The reports culminating from these meetings are submitted for publication in the Journal of Cystic Fibrosis and published on the ECFS website. Prof Gerd Döring, the 2nd ECFS President, was very instrumental in initiating this tradition.
EuroCareCF, an EU funded project led by Dr. David Sheppard from Bristol University, paved the way for two important projects for the ECFS – a European Clinical Trials Network and the further development of the European CF Patient Registry. Under the initial leadership of Prof. Kris De Boeck, the Clinical Trials Network was established in 2008 and currently provides access to 30 large and experienced CF centres, located in 11 different countries throughout Europe, with an ever increasing number of studies being undertaken. The ECFS Patient Registry has been collecting data from both national and single centre European registries over a number of years and records anonymised data for over 25,000 patients. The annual reports of collected data are subsequently published on the ECFS website.
As one of the principle aims of the ECFS is to foster the best possible care for people with cystic fibrosis, a new Standards of Care project was established in 2011 under the direction of Dr. Carlo Castellani. The three main areas being addressed are Best Practice, Centre Framework and Quality Management. In addition, a minimum of four ECFS Working Groups, with specific aims and objectives, are in progress in any one year. For all these activities, the ECFS is extremely grateful for the truly excellent collaboration and cooperation with our international colleagues.