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This website is presented by Cystic Fibrosis Worldwide (CFW). Its purpose is to provide a pathway to authoritative statistics about cystic fibrosis and to facilitate their development in an international setting. 

The CFW Board and Annual Meeting of Members agreed in June 2010 to host the Cystic Fibrosis Data Network (CFDN) in the role of ‘trusted third party’. CFW's involvement aligns with Key Activity Area 3 of its Strategic Plan, ‘Act as a key source of international cystic fibrosis information and resources’ and contributes to fulfilment of its mission, ‘Cystic Fibrosis Worldwide promotes access to knowledge and appropriate care to those people living with cystic fibrosis and among medical, health professionals and governments worldwide’. Notwithstanding the acknowledged alignment with CFW’s strategic objectives, this hosting role was accepted on the understanding that content, quality control and technical development for the website would be overseen by CF data experts.

As with CFW's other activities, the scope of the network is global. By providing an international focus for CF data, CFW aims to magnify the benefits that already flow from existing CF data and analyses from patient registries operating within national and regional boundaries. It also aims to encourage and facilitate collection and improvement of CF data in places where these are needed.

The name 'Cystic Fibrosis Data Network' reflects the way that the website is expected to develop and operate.  During the initial development phase, CFW will invite managers and information professionals from national and regional CF patient registries to participate in governance and to establish technical direction and quality control for the Network.

The focus on patient registry data is deliberate. Patient registries, often called data registries, are the most reliable source of statistical information about a low-prevalence disease.  Cystic fibrosis patient registries are well established in about a dozen countries around the world.

During the development stage the website may begin to accumulate data and related information, but will not be available for general use. The project plan anticipates launch of the Cystic Fibrosis Data Network in the middle of 2011, as a truly international and authoritative CF data resource.