Data Resource Profile: The UK Cystic Fibrosis Registry
نویسندگان
چکیده
Data Resource Profile: The UK Cystic Fibrosis Registry David Taylor-Robinson,* Olia Archangelidi, Siobhán B Carr, Rebecca Cosgriff, Elaine Gunn, Ruth H Keogh, Amy MacDougall, Simon Newsome, Daniela K Schlüter, Sanja Stanojevic and Diana Bilton; on behalf of the CF-EpinNet collaboration Department of Public Health and Policy, University of Liverpool, Liverpool, UK, National Heart and Lung Institute, Imperial College London, London, UK, Department of Paediatric Respiratory Medicine, Royal Brompton and Harefield NHS Foundation Trust, London, Cystic Fibrosis Trust, Aldgate, London, UK, Department of Medical Statistics, London School of Hygiene and Tropical Medicine, London, UK, Centre for Health Informatics, Computing and Statistics (CHICAS), Lancaster University, Lancaster, UK and Translational Medicine, Hospital for Sick Children and Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada
منابع مشابه
Comparative analysis of Cystic Fibrosis Registry data from the UK with USA, France and Australasia.
BACKGROUND Using the UK Cystic Fibrosis Database, we analysed the health of the UK CF paediatric population (UKPP) in terms of their biographical, clinical and infection status and compared outcomes with the US, French and Australasian CF Registries. METHODS UKPP data were collected for 2,673 patients aged less than 18 years in 2001 and used as a reference base for comparison with the most re...
متن کاملAirway clearance techniques used by people with cystic fibrosis in the UK.
OBJECTIVES To describe the current use of airway clearance techniques among people with cystic fibrosis (CF) in the UK, and the baseline characteristics for users of different airway clearance techniques. DESIGN Analysis of the UK CF Registry 2011 data. SETTING AND PARTICIPANTS All people with CF in the UK aged ≥11 years (n=6372). RESULTS Of the 6372 people on the UK CF registry in 2011, ...
متن کاملMacrolide resistance in Pseudomonas aeruginosa: implications for practice.
Long-term low-dose macrolide use is rapidly becoming a standard treatment for a range of inflammatory lung diseases. In cystic fibrosis (CF), the 2014 annual report of the European Cystic Fibrosis Registry [1] shows that the use of macrolides is widespread, ranging from 10% of all CF patients in Austria, 38% in Spain, and 41% in the UK, to 44% in France, 48% in the Netherlands and 62% in Moldov...
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References 1 Nixon GM, Armstrong DS, Carzino R, et al. Clinical outcome after early Pseudomonas aeruginosa infection in cystic fibrosis. J Pediatr 2001; 138: 699–704. 2 Emerson J, Rosenfeld M, McNamara S, et al. Pseudomonas aeruginosa and other predictors of mortality and morbidity in young children with cystic fibrosis. Pediatr Pulmonol 2002; 34: 91–100. 3 Frederiksen B, Koch C, Hoiby N. Antib...
متن کاملRescue therapy within the UK Cystic Fibrosis Registry: An exploration of predictors of intravenous antibiotic use amongst adults with CF
BACKGROUND AND OBJECTIVE Intravenous (i.v.) antibiotics are needed for rescue when preventative therapy fails to achieve stability among adults with cystic fibrosis (CF). Understanding the distribution of i.v. days can provide insight into the care that adults with CF need. We aim to determine the baseline characteristics that are associated with higher i.v. use, in particular to test the hypot...
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عنوان ژورنال:
دوره 47 شماره
صفحات -
تاریخ انتشار 2018