Potential benefits of the UK Cystic Fibrosis Database.
Year: 2004
Type: article
Abstract: Cystic fibrosis (CF) is a complex condition involving genetic, nutritional, inflammatory, pulmonary, gastroenterological, psychological, renal, rheumatological and obstetric complications that arises in a quarter of the offspring from a population of around 2.4 million randomly distributed carriers in the UK. Over the last decade, a generic approach to track the progress of this chronic disease has been established by a multidisciplinary team of clinicians, paramedical staff, computer specialists and experienced clinical data entry personnel at the University of Dundee (see www.cystic-fibrosis.org.uk). The resultant UK CF Database (UKCFD) currently runs within specialist CF clinics in over 65 UK hospitals and aims to facilitate patient care, audit and research by providing customized software to each clinical team after appropriate training. The hypothesis underpinning our approach was that robust software design1,2 could standardize patient care while the resulting multicentre dataset would facilitate local, regional and national audit as well as cross-sectional and longitudinal research. As numbers of CF patients on the database have continued to increase with over 92% of the estimated 7500 patients3 from all the specialist CF Centres across the UK now registered, these benefits to the CF community are beginning to accrue. The software within the UKCFD produces graphical output, and an example showing the age profile of the CF population registered with the database by the end of 2002 is illustrated in Figure 1. Progress in CF care is illustrated by increasing numbers of adults and longevity into old age in some countries. When such survival is common-place, it is anticipated that there will be over 20 000 CF patients in the UK, approximately 3 times the current population.3,4
Source: Europe PMC (PubMed Central)
Authors: G Mehta, E J Sims, F Culross, J D McCormick, A Mehta
Language: English
Subfield: Pulmonary and Respiratory Medicine
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W1916781528