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UK Cystic Fibrosis Registry

Creator:

Cystic Fibrosis Trust

Subject Keywords: Cystic Fibrosis Registry
Set: Chronic Conditions
Rare Disease
Rare Diseases
Conditions
Catalogue: Data
Primary Data Sources
Type: Database
Region: Northern Ireland
United Kingdom
Description:

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:

  1. Patient registration
  2. Patient biography
  3. Clinic visit form
  4. Annual review form

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.

Date:

01/01/2012

Rights: © Cystic Fibrosis Trust
Suggested citation:

Cystic Fibrosis Trust. (2012) UK Cystic Fibrosis Registry [Online]. Available from: http://www.thehealthwell.info/node/113373 [Accessed: 22nd August 2017].

  

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