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About the Network

A Cystic Fibrosis Data Network (CFDN) is envisaged as a collaboration between CF registry managers and data experts working towards harmonised international data.

A proposal by the website's coordinator for the establishment of such a network was presented in a poster displayed at the North American Cystic Fibrosis Conference, Baltimore, June 2010.

Sims G. NACFC Poster 2010 Sims G. NACFC Poster 2010 (859 KB)

Initial attempts to auspice a CF data network through an international agency did not prove successful.  Nor is there universal support at this time for for side-by side presentation of re-processed CF data from patient registry reports, such as the suggested priority content for comparative data outlined on this website.  That will remain an aspiration for the future. There is no doubt that it would be welcomed by data users, whose use of CF data in an international setting remains constrained by conceptual and methodological differences of approach by national registries.  Nevertheless, these differences are acknowledged by CF data managers, and there is general agreement that bringing togther existing data and providing a clearer focus on the discrepancies is a productive step.