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European Centres of Reference Network for Cystic Fibrosis [ECORN-CF] [2006105] - Project
General objectives

The project will develop a multilingual web-based service of expert knowledge and advice on cystic fibrosis for patients, doctors and carers.

Strategic relevance and contribution to the public health programme

The project will enhance patients’, doctors’ and carers’ access to information on cystic fibrosis, and in doing so, will minimise patients’ travel time. In addition, the expert advice will serve as a model for the transfer of knowledge and expertise on rare diseases in EU Member States.

Methods and means

This programme will manage questions coming from lay people and care team members from all participating language zones. The system will make use of the native speaking contact between patient and specialist, who may belong to all professional groups involved in the care team (physician, nurse, dietician, physiotherapist, psychologist, social worker). The questions and answers will be translated to the core language of the system (English), and will then be checked by second experts as to the quality of the response; they will extract keywords,
analyse the degree of congruence with guidelines or check for a lack of evidencebased guidelines, and feed them into a Delphi process for prioritisation for consensus finding.

Expected outcomes period

The project will:
develop a multilingual web-based service on expert knowledge and advice for cystic fibrosis patients, doctors and other carers. Advice will, initially, be made available in English, German, Dutch, Swedish, Polish, Czech, Lithuanian and Romanian;
help detect deficits in existing guidelines, or lack of evidence-based guidelines.

Details
Start date: 01/05/2007
End date: 01/05/2010
Duration: 36 month(s)
Current status: Finalised
Programme title: First Programme of Community action in the field of public health (2003-2008)
EC Contribution: € 460 000,00
Portfolio: Rare diseases