Friday, November 23, 2012

The European Cystic Fibrosis Society (ECFS) is looking to appoint the next Director for the  ECFS Patient Registry


The purpose of the ECFS Patient Registry (ECFSPR) is to measure, survey and compare aspects of cystic fibrosis (CF) and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease, to provide data for epidemiological research and to identify special patient groups suitable for multi-centre trials. The information will facilitate long-term planning of health expenditure allocations and developing pan European support systems.  The ECFSPR website can be found here.

The latest data collection in 2012 (data from 2008 and 2009), included data on more than 26,000 CF patients from 21 countries (national registries or single centres), and for the next collection on 2010 data even more countries and centres plan to join. The registry has its own software that allows entry of data on a yearly level, but we are currently planning a transition to an encounter based software with more functionalities for the single centre use. The ECFSPR issues an annual report on data on a country level as well as a centre-report to the participating single centres. The ECFSPR encourages further use of these data for research and public health planning.

The ECFSPR is a special project under the ECFS and the Director reports to the ECFS Board. Funding is governed by the ECFS Board.

Job Description

The EFSPR Director is responsible for the overall administration of the ECFSPR. Within this framework the Director’s duties are:

  • Works with the ECFS Board and the ECFSPR Steering Group to decide on strategies of the ECFSPR.
  • Oversees the activities of the ECFSPR in close connection with the Executive Coordinator.
  • Chairs the ECFSPR Executive Committee meetings.
  • Chairs the ECFSPR Steering Group meetings.
  • Plans the activities with the Executive Coordinator and other members of the Steering group and the ECFSPR team.
  • Reports to the ECFS Board and the ECFS General Assembly about the activities of the ECFSPR.
  • Represents the ECFSPR at other organisations and ECFS projects/working groups.
  • Supervises the ECFSPR team (personnel management supported by the ECFS Office).


  • Medical doctor working with Cystic Fibrosis, or other education with very thorough knowledge of Cystic Fibrosis.
  • Knowledge of European Data legislation concerning personal data.
  • Fluency in English, both written and spoken, is essential.
  • Some knowledge of other European languages is desirable.
  • Knowledge of and practical experience with disease registries (not necessarily CF) is highly desirable.
  • Experience with registry/patient file software on user-level, preferably with some technical knowledge is highly desirable.
  • Knowledge of population based statistical methods is desirable.
  • Experience in personnel management is desirable.


This is a non remunerated position. However, the Director’s institution is eligible for an annual donation from the ECFS.


Communication with the various teams is primarily by email supported by teleconferences.  It could be expected that the Executive Committee holds a teleconference every second week, the ECFSPR team every second week (alternating), and the Executive Coordinator/ECFSPR Director every week.


Physical meetings (within European countries) include attendance in ECFS Board meetings (up to 4 /year), ECFSPR Executive meetings (2/year), ECFSPR Steering group meeting (2/year), ECFS General Assembly (1/year).

Starting date

June 2013 at the ECFS Conference in Lisbon (12-15 June).  A transition period of six months will be taken into account, assuming full responsibility to the new ECFSPR Director in January 2014. The tenure for the position of ECFSPR Director is 4 years.

Procedure for applying

Please send a written application and curriculum vitae to the ECFSPR Executive Coordinator by December 31, 2012 (