The main aim is to build a model of a "European Centres of Reference Network for Cystic Fibrosis" (ECORN-CF). Patients, doctors, as well as other care team members should have easy access to expert knowledge and advice for cystic fibrosis.
All collaborating partner-countries provide expert advice to their patients and care team members in their mother language on a local website. After translation of questions and answers in English they are published on a central website with open access for everybody who is interested in the topic. Thus there will be a transfer of knowledge and expertise throughout Europe to guarantee the same level of expert advice in all partner countries and to avoid long travelling to the next CF-centre.
Furthermore the program will help to extract data on deficits in existing guidelines or lack of evidence based guidelines and to find a European Consensus for care of CF-patients where it is necessary. Quality assurance measures should raise levels of expertise towards the highest levels in Europe.
The project's EU co-funding ended on April 30, 2010 after 36 months as planned.
For the time being, the continuation of the ECORN-CF expert advice platforms in the different languages and the quality control of the Central Archive (in English) has been enabled by the support of the following partners until the end of 2013.
Christiane Herzog Stiftung (donation of the former German President's wife)
Mukoviszidose e.V. (German CF patient organisation)
ECFS (European Cystic Fibrosis Society)
CFE (Cystic Fibrosis Europe)
Vaincre La Mucoviscidose
Belgische Vereniging voor Strijd tegen Mucoviscidose
Association Belge de Lutte contre la Mucoviscidose
We are currently seeking further external funding to close funding gaps.