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Cystic Fibrosis Trust
|Subject Keywords:||Cystic Fibrosis Registry|
Primary Data Sources
The UK Cystic Fibrosis Registry tracks the health of people with CF throughout the UK; its primary purpose is to help drive up the standard of clinical care.
In 2007 the Cystic Fibrosis Trust implemented the new CF Registry using the user friendly web-based technology of Port CF (replacing the old UK CF Database).
The registry is populated with data from four data collection forms including:
Clinical Data is collected in specialist CF Centres and network shared care clinics and entered into Port CF, a database written specifically for this purpose. Each year an anonymised version of the complete set of data is analysed and a 'snapshot' of demographic and clinical outcome data is produced and published in the Annual Data Report.
|Rights:||© Cystic Fibrosis Trust|
Cystic Fibrosis Trust. (2012) UK Cystic Fibrosis Registry [Online]. Available from: http://www.thehealthwell.info/node/113373 [Accessed: 24th March 2017].
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