Cystic Fibrosis European Network

The Cystic Fibrosis European Network History

The first European Funded consortium for Cystic Fibrosis was set up in 1989 by Bob Williamson (working at that period in St Mary's Hospital in London) just before the CFTR gene was identified. The main goal of this consortium was to ensure the application of the CF gene technologies as quickly and as widely as possible, not only to the big labs but also to everyone who could use it to help their local populations.

Courses on the use of PCR and other technologies to identify mutations in the CFTR gene were organised. Exchange of staff with EU funding was possible, hundred sets of primers and control DNA were sent to laboratories to facilitate the study on the distribution of the different mutations throughout Europe.

A new proposal was submitted and approved by the European Commission on the initiative and coordination of Michel Goossens (Inserm Créteil, France). Continuation through exchange of staff and techniques, to help to ensure the application of the CF gene technologies in European labs, for the next three years was possible.

Different workshops were organised and the newsletter was further distributed.

Since 1996, Jean-Jacques Cassiman (Leuven, Belgium) took over the coordination of the concerted action with a new approved EU project (Biomed-2). The general objective of the latter concerted action was to develop high quality procedures for genetic testing. The participation in this action has gradually grown up to more than 160 laboratories distributed all over the European countries, including Eastern and Central Europe.

We built further on the basis but in addition we added a stronger European dimension on what was going on with regard to testing and counselling. Quality assessment schemes, to evaluate the quality of genetic testing for CF, were annually organised since 1996 by Els Dequeker. More than 170 laboratories participated in 1999. These successive schemes resulted in a gradual improvement on the quality of genetic testing for CF.

Different regional and European workshops were organised to bring people together involved in molecular diagnostic testing.

The nine-year running concerted action for CF indicated the need for closer interactions between the patient organisations and the clinical profession as well those involved in fundamental research on CF. A new European project was approved under the 5th framework program from the European Union, with the aim to create a unique European interaction platform for scientists involved in fundamental CF research, for the more than 160 genetic diagnostic laboratories, for CF associations of families, patients and clinicians, ethical, legal and IPR experts and representatives of the industry.

This project was coordinated from the Center for Human Genetics (Leuven, Belgium) by Jean- Jacques Cassiman as is the latest project, EuroGentest. The EuroGentest Network of ExcellenceExit this website will improve the organization and harmonization of external quality assessment/assurance schemes, facilitate the development of guidelines and support the accreditation/certification of the genetic services. In addition, collaboration between academic centers and the private sector on technology development and the validation of genetic tests, should generate more rapid translation and accurate, more economical and overall better testing technologies.

Last changed: 2014-12-18

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