Friday, February 11, 2011

News from the Society

Letter from the President
ECFS Award 2011
ECFS Board Elections
ECFSClinical Trials Network
ECFS Patient Registry

Letter from the President - Stuart Elborn

Dear Friends,

First of all I take this opportunity to wish you all a (belated) very happy New Year.  At the ECFS we have a lot coming up over the next months and I hope you will join us for some of these activities.

Our two annual conferences are now open for registration and further information about both is available on the website.  The Basic Science meeting will for the first time be held in Italy between 30 March-2 April, and we welcome Harry Cuppens from Belgium, Christine Bear from Canada, and Luis Galietta from Italy as this year’s co-chairs.  We look forward to bringing together top international scientists in CF to intensively discuss progress in developing new therapies to correct CFTR, tackle chronic infection and reduce the injury associated with inflammation in the chronically infected lung.  Supporting basic science remains a high priority for us at ECFS and we are looking forward to welcoming young researchers to this important conference.

Our main conference this year is in Hamburg, Germany.   We have an excellent programme with almost all our speakers now confirmed and we would like to thank those of you who have submitted abstracts.  This year again we aim to have as many oral presentations as possible, with our short spoken ‘poster’ presentations and we have again added some extra sessions to increase participation.   Thank you to all who have agreed to contribute and I am sure we will have an excellent conference in Hamburg.

The ECFS Clinical Trials Network has seen excellent developments during the past year, with more than 10 protocols reviewed, some in conjunction with the CFF Therapeutics Development Network in the US.  The CTN will extend the number of European CF centres involved in the network.  Accordingly, an invitation for applications was published last autumn and 50 applications were received by the deadline of 15 January 2011.   The applications are currently being reviewed and the results will be made available before the June conference.

In the last few months, the ECFS Patient Registry has established new terms of reference and a new structure, and I am delighted that Dr. Hanne Olesen has accepted the role as Director for this very important project.   In January 2011, there was a meeting of the both the Registry and CTN groups in Paris with over 70 participants.  This joint meeting further enhanced the working relationship between the two projects.   We are advertising for a new position of Executive Coordinator for the Patient Registry, a post which we feel is now essential to assist with the ever increasing administration and logistics demands of this group.

At our Board meeting in Baltimore last October, we decided to review the status of the ECFS Working Groups, and to implement new terms of reference for these specialist arenas. In view of the number of requests to establish new Working Groups, and the ECFS commitment to financially support their work, it was clear that there was a requirement to limit the number of officially recognised groups in any given year.  It was also recognised that clear aims and objectives supported by a business plan, would be required before support could be approved.  At our Board meeting in January, we agreed to the establishment of four new working groups, the details of which will be made available on the ECFS website very shortly.  

At the ECFS office, we welcome a new staff member, Thérèse Chalayer, who joined Christine in January of this year, and some of you will have already been receiving emails from her.   Sarah continues to work part-time for the Society.  We are indebted to the great support from the office which is at the heart of all our activities.

Finally just to let you know there will be further elections this year for the ECFS board. If you would be interested in nominating someone or standing yourself for the board, please find further information about the elections below.  Please consider how important these elections are for the future of the Society.

I look forward to seeing you at some of our many activities in this coming year and again wish you a happy and productive 2011. 

Stuart Elborn, President ECFS

2011 Membership Subscriptions

If you have not already done so, please remember to renew your membership subscription for 2011 to ensure continued receipt of the Journal of Cystic Fibrosis, and a lower registration fee for the annual conferences. Membership subscriptions can be paid online via the Society's website. For further information please visit

2011 ECFS Award – Call for Nominations

The ECFS Award is given annually to honour a person who has made an outstanding contribution to our basic understanding of cystic fibrosis or to the treatment or care of patients with cystic fibrosis. The winner of the award will be invited to present a lecture at the Opening Ceremony on 8 June 2011 of the annual conference in Hamburg. 
You are cordially invited to nominate a candidate for this award.  The deadline for proposals is 1 March 2011.  Please mail your proposal to Christine Dubois ( accompanied by a detailed motivation and curriculum vitae of the candidate. 

2011 ECFS Board Elections – Call for Nominations

The ECFS Election Committee cordially invites nominations for 3 positions for the ECFS Board.
Nominations should be sent to Christine Dubois ( by 4 March 2011 together with a motivational statement, confirmation that the candidate has agreed to the nomination, and a curriculum vitae. All nominated candidates must be current members of the ECFS. The nominated candidates will be reviewed by the Election Committee who will provide a recommendation prior to circulating the nominees’ information to the ECFS membership for a postal vote.  The Chairman of the Election Committee will announce the results of the vote at the Annual General Meeting on 8 June 2011.

ECFS-CTN Steering Committee meeting, January 13-14, 2011, Paris

The start of the new year was a good moment for the Clinical Trials Network site representatives and the different working committees (protocol review, networking, training, standardization, DSMB), to look back at the past year’s achievements and to make new plans for the future.

More than 10 protocols were reviewed by the protocol review committee in 2010. As a result, 2011 will be a busy year with several trials starting up in CTN sites.  A public listing of CTN trials that are recruiting patients or that are finished is available on

January 15th was the deadline for applications of new sites that want to join the CTN.  In the next few months, more than 50 applications from 12 different countries will be evaluated and ranked. By 2012, the CTN will expand with a maximum of 10 new sites.

Another important action point is the creation of a long term plan for cooperation with Patient Organizations on the national and European level.

More news on the CTN activities will be published in the next CTN Newsletter (March 2011), which will be available on

ECFS Patient Registry – Applications for Executive Coordinator

The ECFS Patient registry is now receiving applications for an Executive Coordinator.  Further information about this position can be found at:

EuroCareCF – Registry Report

From David Sheppard and Anil Mehta

The EurocareCF Project has now reached the stage of producing its final reports.  Should you wish to access the Registry Report from 35 countries, it will be available in two places. It is immediately available on the home page of the Cystic Fibrosis Journal and later it will be available on the EurocareCF website (  Should you wish to have a rapid overview of the project (pdf only without a print out) then please go to the EurocareCF site, whereas if you want to print individual documents such as Europe or country data or consent/patient information forms etc, then the Journal home page is the best source for this individualised information.  A further message will be distributed once the reports are available on the EuroCareCF website.