Abstract
The aim of the European Union (EU)-funded Thematic Network on Cystic Fibrosis (2000–2004) was to attempt to create a unique European platform for scientists involved in fundamental cystic fibrosis (CF) research for more than 200 European genetic diagnostic laboratories, for CF associations of families, patients, and clinicians; ethical, legal, and IPR experts; and representatives of the industry. The network involved all those who wanted to join whether in EU or non-EU countries, while closely interacting with the European Cystic Fibrosis Society. The philosophy of the network grew out of the experience gained during the previous European Concerted Actions on Cystic Fibrosis, which, while very successful—four large quality assessments, regular newsletter, successful regional training sessions, draft of guidelines for diagnostic laboratories and of leaflets for the families, different publications in peer-reviewed journals, and several symposia in Europe—showed the necessity of closer interactions with patient organizations and the clinical profession, as well as with those involved in the more fundamental research on the pathogenesis of the disease and the development of new diagnostics and therapeutics, and with representatives of industries involved in diagnostics and therapeutics. This network allowed us to bring together all parties involved in the same quest—the fight against CF—to make information available to everybody concerned, to promote interactions between the parties, and to draft consensus guidelines on the application of this new knowledge. A series of more fundamental EU-funded RTD projects on CF also joined the network over the years. The CFTR Expression Working Group has done a remarkable job, as will be clear from the present publication. The very successful external quality assessment schemes have already dramatically improved the quality of genetic testing. Guidelines for molecular testing and reporting have been or are being published, while an internationally approved informed consent form was developed. Very active exchanges with the molecular diagnostic industry, and communications between researchers and clinicians have been established. The present publication illustrates one of the activities of the network. A large group of network participants was able, on a voluntary basis, to collect during 4 years a unique set of information on techniques, methods, products, and animal models, and to make this available freely to anybody interested. The wealth of information and its quality, which was the result of discussions and thorough review by participants and expert section editors, makes this a unique instrument for the CF research community all over the world. We do not doubt that this will also be a stimulus for researchers to continue to interact with each other and to supply this database with additional and newer methods when they become available. We salute the drive and expertise of Margarida Amaral and her team of section editors without whom this source of unique information would not have seen the light. Whether the existing CF network will be able to extend its activities one way or another under the sixth framework program of the EU remains unclear up to now. What is clear is that the return of investment by the European community is undisputable.
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